Got some devastating news yesterday - I have Multiple Sclerosis

[dorkzilla]

I’ve been suffering with vertigo on and off for years now, and the latest bout has lasted 9 weeks. Several specialist visits later got me to a neurologist who ordered several MRI’s, and this was the result.

I’m fairly gobsmacked right now; no one in my family has this and the only experience I have with MS is that one of my former boss’s wife had it bad. I’m not sure what kind I have yet, I am waiting for a call from my neuro right now for more details.

Once again asking my DU family for help/insight - anyone have or are close to anyone with this? Please don’t sugar coat it - I know the disease is manageable but I’m wondering about drug treatment (I know the best options out there involve daily injections), diets etc.

Thanks in advance.

[spooky3]

1. Hang in there.

Positive vibes to you.

[InAbLuEsTaTe]

103. Echoing the positive vibes...you can beat this thing!

[Wilms]

2. Make sure it isn't Lyme disease.

Apparently it can sometimes be hard to differentiate between the two. I know someone with Lyme who was originally diagnosed with MS. Check and double-check. A "Lyme literate" doctor can help you sort through it.

[Lochloosa]

4. I agree...you ( I meant the OP) are in ground zero for Lyme.

[dorkzilla]

7. I’ve had Lyme twice already :(

I live in a very Lyme-active area (Westchester County New York, not far from Lyme) and the local medical community is very savvy in that regard. I did actually ask both my docs about it (and asked about any possible like between Lyme and MS) and they’re confident its MS.

I also had Epstein-Barr back in 2000 and there is a lot of evidence suggesting there is a link between them.

[dixiegrrrrl]

14. not clear on what you said....link between Epstein-Barr and MS

or Epstein-Barr and Lyme???

And what specifically did the docs point to that made them confident in MS vs. Lyme?

[dorkzilla]

21. Sorry - Epstein-Barr and MS

Found on MS Society website:

The case for Epstein-Barr virus (EBV)
Several studies by Alberto Ascherio, MD, DrPH, and his team at the Harvard School of Public Health have suggested that EBV is involved in MS. The studies found that:

Antibodies (immune proteins that indicate a person has been exposed) to EBV were significantly higher in people who eventually developed MS than in control samples of people who did not get the disease.

MS risk increased significantly following infection with EBV, thereby demonstrating that EBV was in the body before MS developed.

People with a specific immune-related gene and high levels of antibodies to EBV in their blood were nine times more likely to develop MS than those without the gene and with low levels of the antibodies.

Current or previous smokers with the highest levels of EBV antibodies were 70 percent more likely to develop MS than those with neither risk factor.

http://www.nationalmssociety.org/What-is-MS/What-Causes-MS/Viruses#section-1

As for the Lyme, the MRI shows positive for demyelinating which doesn’t present in Lyme cases. Also my neuro is also a professor at NY Medical College and they do groundbreaking and multidisciplinary research and treatment in Lyme. I’m pretty confident in his analysis.

[Wilms]

144. Demyelinating can present in Lyme cases.

In the late period of Lyme disease demyelinating involvement of central nervous system can develop and MS can be erroneously diagnosed.

http://www.ncbi.nlm.nih.gov/pubmed/17197115?ordinalpos=7&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

The diagnoses and treatment of Lyme is very controversial.

[Wilms]

17. OK. It just makes me nervous.

I'd rather a Lyme literate doctor tell me it's MS instead of an MS specialist saying so. In the case of the guy I know, his MS doctor first refused the new diagnoses. One year later he changed his tune.

Vibes to you.

[dorkzilla]

23. oh I totally get that!

Since we are in such an active place for Lyme, it must be asked of any practitioner. Back in the 90’s I had many friends who were misdiagnosed with other things when it was Lyme all the time and the local doctors knew they had to get ahead on that. My dad got erlichiosis really bad from it and they were the ones who identified it.

[Laffy Kat]

158. I work in radiology.

There are specific characteristics, lesions, that show up in your brain and spinal cord with MS. Your MRIs were read by both a radiologist and neurologist and a diagnosis was made based on those images and your clinical symptoms. Sometimes they also look for certain proteins in your CSF which can also be telling, but are not always present.

Positive thoughts your way; it must be such a shock.

[MADem]

129. Outstanding advice. nt

[FourScore]

205. This is excellent advice. But I would like to add -

If you have been having symptoms for 9 years, then the standard antibody test will most likely come up negative. There are other tests that are much better. The testing can be expensive, since most insurance companies only pay for the standard Western Blot - the least accurate. But I would make it work somehow. You need to find out for sure before you start treating MS.

It is imperative to talk to a good "lyme literate" doctor, and there are not that many of them, even here in the NE where lyme is rampant.

[Wilms]

206. That sounds right to me.

And don't be surprised if the insurance company WILL pay for it.

[hollysmom]

3. my aunt had MS for 60 years

her daughter was a medical researcher
Some people are lucky and it advances slowly and you can have an almost normal life, others it advances quickly. My aunt did not lose most of her walking until she was 90. She had many remissions.
The big thing is to keep on top of the latest information, just don't trust your doctor. Set up news alerts for any news of this disease and any medications, attend a support group,

I wish you the best of luck and the least damaging version of this disease.

[CountAllVotes]

153. +1000

Best advice I've seen in a very long time. Thank you!

[1939]

5. Sorry to hear

My sister was diagnosed about 25 years ago. She does well with it and takes her meds for it. She just understands that while out shopping or other outings that when she feels tired to immediately sit down and rest up a bit.

On the other hand, college friend's wife had it and was in a nursing home for most of her life, it completely crippled her. She got it at 25 and was in the nursing home from her early 30s till she passed.

Sorry to be a downer, but those are the two sides of the coin.

[London Lover Man]

6. Cannabis is a good start.

I've heard some good things about MS and cannabis.

https://healthyhempoil.com/hemp-oil-multiple-sclerosis/#.Va-ksHUViko

[dorkzilla]

10. very interesting

Thanks for the link! I will share this with my doctor.

[jtuck004]

56. "I will share this with my doctor." < That's very generous of you. <G>n/t

[dorkzilla]

57. Hahahaha - she can have my wine but if I get a MMJ card its MINE ALL MINE!!!! LOL!

[jtuck004]

59. Laughter helps too. <G> We wish you well. n/t

[Eleanors38]

80. I second this. Check out what protocols there are. Good luck.

[ProfessorGAC]

8. Don't Panic!

I had the same reaction when i got the news 20 years ago last March.

I still work full time, i play golf in the 70's, still bowl in the 220's, can still play piano and guitar.

The magazine from NMSS showed a woman in her 30's mountain climbing.

Catching it early and getting on a mechanism blocker worked wonders for me. The only real serious long lasting thing for me is the blindness in my left eye. But, aside from some twitchy leg muscles and a burning sensation in my feet, i am doing fine.

[tblue]

26. You're an inspiration!

For all of us.

[alfredo]

137. I thought my world ended with a Crohn's diagnosis.

That was 36 years ago. The horror stories are sometimes worse than the reality.

My friend has Coilitis and MS for nearly as long as I've the Crohn's, and is doing just fine. The Colitis is still a pain in the ass.

[dorkzilla]

139. I see what you did there...

[alfredo]

145. Humor is one of your best weapons.

[MineralMan]

9. Follow your doctor's advice closely. Treatment is much better

now than previously.

Also, look skeptically at non-professional advice from people who are not medical professionals. You'll get a lot of it. Just listen to your physicians and communicate with them with any new symptoms or improvements.

[ProfessorGAC]

11. What MM Said

My neuro and i are on great and open terms. And, i don't buy any anecdotal stuff, so i just take the meds (betaseron), watch my tolerance for heat, and i've been good for 2 decades.

[dorkzilla]

15. Can I ask what kind of MS you have? Sounds like you’ve got Relapsing-Remitting

I was reading a British study last night that also tracts age at diagnosis with life expectancy. Most people are diagnosed aged 25-40. I will be 50 in a month, and that’s not usually a positive thing.

[ProfessorGAC]

19. Really, I'm Closer To Cerebellar

The reason i say that is that in RR forms, people who have a relapse have symptoms nearly disappear when the remit hits. I don't ever lose the symptoms. They're baseline. Not getting worse, but my vision never improves in the left eye, the twitches never go away and the burning is always there. It's all tolerable, but persistent.

Also, i did some data modeling for NMSS (volunteer) back in the 90's and early oughts. As i recall, the severity based upon age was usually harsher the younger at the time of onset. That work was done on my old Mac and i don't have access to one now, so i can't remember for sure, but recall that.

Also, it does tend to be a bit less aggressive on men than women, so that's another advantage. I was 39 at diagnosis.

Last point: guy who lives on the golf course got diagnosed about 4 years ago. He was 62. He's doing better now than he was at diagnosis.

So, like i said in my reply to your OP: don't panic. Too many variables to consider this a prison sentence.

[dorkzilla]

28. Thank you for all that.

It’s early days for me, and I’m trying not to go nuts on the internet reading things and conflating stuff and jumping to conclusions but its hard not to let your imagination get the better of you.

One thing positive I did do - I decided to move up an item on my 10 year travel bucket list and next fall a friend of mine and I are going to do the Camino de Santiago hike. I’ve wanted to do it since I was in my early teens when I heard about it on summer holiday in Ireland by a friend of the family and it captivated me. I have a sneaking suspicion our twosome will end up being much larger knowing my friends!

[ProfessorGAC]

29. Cool!

That's a good plan to keep a positive mindset.

As someone downthread says, MS is a capricious disease. Very different in many ways for many, many people. But, much more treatable and controllable than even 30 years ago.

For me, a mantra has been "If i surrender, it will only get worse. So keep chin high and just keep movin'"

[mntleo2]

166. Hope you journal here about it!

...that is a life affirming journey I hear. It would be so wonderful if you tell us all about it as you go ~ if you can find any Internet. Hang in there Hon, this may be so hard to digest ~ and I will pray for you!

Love, Cat in Seattle

[dorkzilla]

167. Thanks Cat, I’m planning on it!

In addition to blogging, my friend who is doing the walk with me is a real computer genius and he’s already designing a website where we’re going to be uploading pictures and stories every day. He is in his 40s but he’s already had a major heart attack and heart surgery and when I mentioned to him the other day that I was going to do this (alone was my original thought) he said I’M GOING WITH YOU! Its on his bucket list as well. He was totally in agreement that this walk must be done before we die.

He’s brilliant and funny and I can’t think of anyone more entertaining than him (besides my hubby, but hubby can’t take a month off for the walk though he may join us for the last week) so it should be really fun. We’re both very extraverted and love talking to people so I’m sure we’ll collect lots of stories along the way. Also the sight of us the 2 of us will probably elicit some reaction because I’m what you might describe as a buxom blonde Anglo Irish woman of average height and he’s a short Taiwanese American guy with a great build.

I’m sure we’re going to have a blast, and I will be sharing stories here as well.

[dorkzilla]

12. Thanks Mineral Man!

...and naturally I will be skeptical -if I weren’t a natural skeptic I’d be a Republican

[MineralMan]

13. All the best to you!

[dorkzilla]

16. Thank you! nt

[jeff47]

18. For now, just breathe.

There's a wide difference between the "flavors" of MS. Some are very bad. Some are mostly controllable by medication.

Until you find out which one you have, you can't know what is coming.

[dorkzilla]

62. Waiting for my doc to inform me as to which flavor, hopefully vanilla

All I can do is wait at this point. And breathe. And drink copious amounts of wine Its the only thing that makes me walk straight!!!

[harun]

172. What was the test they performed that confirmed you have it?

Have always had weird health problems and was thinking of talking to my doctor about additional testing.

[dorkzilla]

176. The one that finally confirmed it was a brain MRI

but they’ve done SO many other tests to rule out things like inner ear diseases (the ENT ran about 5 tests on me including hearing and balance and stuck a bunch of electrodes on my head for god knows what test), I’ve had probably 8 blood workups too, nothing at all out of whack until the brain MRI. The pattern of scaring and lesions and something in my white matter all confirmed what my GP suspected but never told me until it was confirmed.

My most prevalent and bothersome symptom was/is vertigo. Its been happening for YEARS but always thought it was my sinuses (one ENT said I had a bad deviated septum so my sinuses were never draining properly and thats what was mostly causing it).

In retrospect, one of the weirdest symptoms I had started last year and lasted for about 6 months - - my eye was twitching uncontrollably and it wasn’t one of those subtle twitches that you think everyone can see but you feel it more than anything. One of my staff members said “why do you keep winking at me?” Doctor thought it was a calcium deficiency, tested for it, not a problem there. Went to an eye doctor, he found nothing alarming so once again, i thought it was because of my dodgy neck or stress since I had literally just opened my restaurant. Just yesterday I thought “I wonder if there is any connection” so I started researching. BAM, there it is - its often an early sign of MS.

I have terrible tingling in my hands and feet which I attributed to dodgy neck and a bad lower back. Turns out, MS.

[harun]

180. Thanks for the info!

Did you ever have mono when you were younger?

[dorkzilla]

181. That’s where my doctor thinks the EBV virus came from

He thinks I had it and didn’t get treated. All these things seem to be related.

[harun]

182. Yeah, I had mono when younger and have always worried about that.

[dorkzilla]

184. So are you having any MS-type symptoms?

Or are you just afraid because of the mono?

[harun]

185. Like you I have had back and neck problems with a stressful

job so it is hard to tell the real problem.

I had vertigo for a bit about 10 years ago. None sense then. No bad eye twitching or numbness.

I will bring it up with my doctor but could be a lot of other things too.

[dorkzilla]

187. Better safe than sorry

if you DO have it, however unlikely, you’re better off starting the meds as early as you can. Sometimes, all we have to say to our doctors is “i have X and X, and i know its probably X but I’d feel comfortable if we could look at MS as a possible cause”.

Good luck and please PM me if you have any questions.

[harun]

188. Thanks, peoples experiences with such things really help out!

[lumberjack_jeff]

20. While you are working on the medical aspects, consider the financial ones.

Specifically, talk with a lawyer about putting your assets in trust.

[dorkzilla]

35. That is great advice

I just got married a couple of months ago, so its time I thought about that anyway - - this just pushes it to the front of the to-do queue.

[Yo_Mama]

111. Treatments have vastly improved.

Follow through completely on the medical lines. If you avoid damage early you will be thankful for a lifetime.

Lower your stress levels and live a healthy life. Enjoy life.

I know quite a few long-term MS people with no real life-limiting deficits after 15 or 20 years. Being older at diagnosis seems to GENERALLY correlate with milder disease/slower progression.

[tblue]

24. I'll ask around.

Hang in there, sweetie. We'll help you.

[dorkzilla]

31. Thanks! You always do! I love my DU family <3 n/t

[JaneFordA]

25. MS the PEST! :-/

Hey there, Dorkzilla!

Fellow MS-er of 26 years here. That vertigo is the most aggravating thing in the world, isn't it?!?!?! Bleh and double bleh.

You're going to have a lot of material to wade through as you begin this journey but the most important thing is to find a neuro you can trust. Do not hesitate to "fire, fire at will" if one (or five, in my case) try to shoe-horn you into a regimen that brings up your red flags.

As surely as there are no two MS patients alike, there is no "one size fits all" therapy, either. I'm more than happy to direct you to a couple of websites for MS patients... if I can find them since my latest but not so greatest system crash!

All the best to you. I find that a streaming NetFlix marathon is good for what ails a super dooper "event." And chocolate. Always chocolate.

--Jane the Pain

[dorkzilla]

30. I like that prescription!

That’s just what I was planning on doing the next couple of days - except for the chocolate so THANK YOU for adding that into the mix! They just added a bunch of art documentaries by an art critic that I adore, Waldemar Januszczak, on Acorn so I was going to binge-watch all of them, then watch another art/travel documentary by the always amusing Brian Sewell (“The Grand Tour”) on youtube. Thank god for my roku!!!!

And AMEN to the vertigo...I haven’t been able to drive in weeks, let alone walk well, turn quickly or squat down to hug my dogs or give my kitties a pat without falling on the floor.

[democrank]

27. Keep your chin up, dorkzilla.

I`m sending positive thoughts your way.

[dorkzilla]

41. Thanks!

My Irish grandma always used to say “keep your pecker up!” until I explained to her what the modern American meaning of pecker was. The poor woman blushed like a bride on her wedding night. She said “I say that to Father Healy all the time”!

[Armstead]

32. I have a friend in his late 60's who was diagnised in his 20's

He's had a great life overall.

I won't deny that he has had to deal with some bad effects at times. But overall, he's had a good quality of life and at 69 is still cutting wood, doing house repairs and doing other normal things.

[SheilaT]

33. A lot of good, sensible advice here.

I will add this: Don't fall for anyone who tells you that if you only eliminate this from your diet, or consume a lot of some particular vitamin, then your MS will be cured. Right now there is no magic cure for MS, and if one is discovered, it won't be a secret.

I want to add some personal experience.

Both of my sons have an auto-immune disorder, alopecia areata. It causes hair loss, and both my sons have the most extreme form, universalis, which means they are totally bald. No eyebrows, eyelashes, body hair at all. Now this is NOTHING like MS, and I'm under no delusion that it is. But I have run across far too many people who think they have the secret to the magic cure. It's impossible to talk sense into them, and I've long ago give up trying.

I suspect you may come across the same sort of people in connection with MS. If you do, ignore them. I know this can be a terrible disease, but there's a community out there, even here on MS, you can depend on for support. Right now you are in shock from this unexpected diagnosis. You will adjust. Hang in there.

[dorkzilla]

37. LOL, my well-intentioned and loving but CT-prone brother gave me his advice last night...

His girlfriend’s ex-husband has it bad so she is concerned that her daughter may get it so she “knows” a lot about it, according to him. He said the magic panacea is goat milk.

I politely listen to all, but I’m not prone to taking anything seriously without a good deal of hard data before I act. I’m sure I will spend many an amusing moment listening to stories of bee sting therapy in the weeks to come.

[JayhawkSD]

34. Don't panic is good advice.

I was diagnosed with Parkinson's Disease 12 years ago. My wife was freaked. Her father died with the disease, feeding tube and everything, and it was not pretty. I was initially thrown back on my heels, but I'm more a "one day at a time" kind of guy, and it caused friction between us.

Twelve years later, she recognizes how much times have changed. Medication controls the issue almost completely, and she actually asks what my six months appointment with the neurologist is about. "Oh, yeah," she says, "that."

Different medical problem, to be sure, but similar circumstance. A major contribution to keeping such issues in check is attitude. Keep a mental approach of, "I will work with this and do what I need to do because I have it, but I will not let it dictate my life." Doctors love that because it helps them keep you well.

[dorkzilla]

39. If I ever had an advantage, its my chin up attitude and my goofiness

I have no choice but to look forward and my natural silliness will no doubt help a lot. When I was at my GP’s office yesterday my gallows humor set in and my doctor was in stitches laughing.

[Recursion]

36. My sister has it. We're light years ahead of where we were

even ten years ago. I'm so sorry to hear this but it's not the sentence it was when we were growing up.

[dorkzilla]

38. I’m beginning to understand that, thankfully

When we were kids it was tantamount to a slow death sentence. Thankfully things have changed!

[0rganism]

40. i was diagnosed with it in 2011

...after a several month attack which included optical neuritis (went blind in one eye for several weeks), tinnitis, dizziness, and severe loss of balance. it let up, i recovered almost completely, and went on thinking maybe i had it licked.

since a second attack last year which took sense nerves out of my leg activities for several weeks, i've started taking Copaxone (injections 3x/week, helps with RRMS) and got my MMJ card (helps with the minor symptoms), and it's been fairly quiet after that. i had what felt like the beginnings of another attack in my left arm a couple weeks back but it stopped after 24 hours, i think it might have been suppressed by the Copaxone.

There are several things that can help you right off
1. get one of the modern MS meds pronto - they can really help (i hope you have good insurance though). don't waste time with "alternative" stuff, MS is an autoimmune disorder that you can't fix with dietary supplements.
2. get that medical MJ card ASAP if you're in a state that permits it. it will help a lot, i find it helps me with disesthysia effects, injection discomfort, and various other things.
3. keep up your regular schedule as much as possible, don't let it mess up your life more than it has to. you may need to scale back on activities that require certain physical capabilities at times, but early on this won't be permanent.
4. Don't Panic! you can manage this disease if you catch it early
5. at DU you can check out the Chronic Health Conditions and Cannabis discussion groups for more support, they can really help

good luck to you - this is a long fight, pace yourself

[dorkzilla]

51. Thank you!

Sorry you have it, but you seem to be on top of it and you’ve found some things that help you.

I’m definitely going to look into the MMJ card thing (I’m in NY); I am assuming MS is one of the things that they’ll accept as a qualifier. I haven’t had it since I was a teenager and back then all it did was make me paranoid.

[0rganism]

69. no problem - the key is not to despair

MS is a nasty disease when it hits you, it can take damn near any bodily function away from you with minimal warning and if it returns at all, it comes back at least slightly worse than it was before. but it doesn't happen all at once, you have time to deal with it, time to get the treatment and support you need. as long as you're being at least somewhat proactive, you can keep MS from ruining your life, for a while anyway.

i've noticed that my attitude towards normal operation has changed significantly over the last 3-4 years. used to be, i only paid attention to body functions if they were malfunctioning or broken; now i have some real gratitude for them just when they work as expected. it's not hard to find people who've got it a lot worse than an early-stage RRMS patient, for any number of reasons, and i have a renewed appreciation for the difficulties they face as well as my own health, such as it is.

i think you'll find the new strains of MMJ are a very different critter from what your teenage self encountered. plus you have a lot of choice in terms of delivery - flowers, edibles, oils, tinctures, rubbing salves, etc. if you visit a good dispensary, they'll be able to tell you about the concentrations of various interesting ingredients in whatever form you choose to get it. look for a mix of THC and high CBDs - both are helpful for treating MS symptoms, but you probably won't find them in the same flower - you'll have to mix & match.

[ProfessorGAC]

75. Your Vision Came Back From The Neuritis?!?

Boy, am i envious. My vision never came back after my onset. That's the one thing i wish had remitted. But, i've got one tiny lesion right on the area of the brain stem where they are quite sure the optic nerve lands. So, that's damage that can't be undone.

I'd probably still be a scratch player if i could read greens with both eyes.

Good luck on your future and to all of us with the illness.

[0rganism]

82. i hear ya - those were some dismal weeks

i went to an optometrist a while after that, and she was quite surprised i got vision back - usually they want to put people on cortical steroids right away to try to keep the nerve alive.

my nerve was damaged, and my vision's weaker now in my right eye, but oh that depth perception - it's really nice to have.

i remember that was one thing that made me super upset, losing depth perception. just one more thing i didn't think much about until it was gone. i was happy when it came back.

[ProfessorGAC]

105. Therein Lies The Difference I Think

I have no nerve damage. It's strictly that lesion on the brain. I still have a hard time catching something thrown to my left side because i lose how far away it is between around 2 and 6 feet. Then i'm just guessing.

[Gothmog]

42. You will be in my prayers

[dorkzilla]

45. Thank you-it’s much appreciated!

[libodem]

43. Love and light

They have lots of new treatment options that seen to lessen the periods of exacerbation and keep you in remission. New pills that have taken the place of some stuff that was injectable. One of my good friends went to an oral agent and is doing great.

Praying you find your best option and you get help from insurance or the manufacturer.

[dorkzilla]

44. That’s great to hear! I hate needles!

I would have made a very poor junkie

[LiberalLoner]

46. I am so sorry. I have Multiple Sclerosis, too.

The first thing you need to know: Life goes on. Life is still worth living.

I've had MS for decades, but it took until a couple years ago, to finally get diagnosed correctly. I was in the neuro ICU at Walter Reed for ten days with what was clearly Transverse Myelitis, but was misdiagnosed as GBS because they could not do an MRI on me at that time and because my doctor was a bit incompetent.

Once I had an implant removed and was finally able to get an MRI done, the massive damage was shown. My spinal cord in particular is screwed, LOL.

It actually was a HUGE relief to get diagnosed. I have been fighting weird symptoms and crippling fatigue for so so so long...docs all telling me it was depression, all in my head....finally with a diagnosis I had an answer and people accepted what I was saying as far as symptoms went and my struggles.

It might help for you to join an MS support group. Lots of them around. There are some good books about MS, too. It helped me to read books written by other MSers because it felt like having a friend there, who understood, explaining stuff to me.

I inject Copaxone daily. I was scared the first few times but now it's just routine. Within about a week it became truly no big deal. I got big itchy welts at first but my body adjusted and now it's not so bad at all.

Really once you adjust to your diagnosis, you will find your life goes on and things are okay. I mean yeah, you have symptoms, bad spells and better times, and symptoms accumulate over time, but it's really all okay.

In fact I love my life now. The diagnosis gave me the strength to say "no" to people and activities that were making me miserable.

Now I spend much more time doing what I love most. I feel content and grateful for every single day.

I hope you will find some peace of mind too, in the midst of this disease.

I can PM you my phone number if you would like to talk on the phone some. Just let me know.

((((((Hugs)))))))

[dorkzilla]

49. That would be great, thank you!

I may need it just in case and I will PM you back with mine.

So...so many questions. I think I’ve had this for a while, too. Like I said up thread, I had Epstein Barr back in 2000. A few times since, I’ve felt like this and just assumed it was the EBV flaring up, so I went back to my doctor and he drew blood and there was no indication that the virus was acting up. In hindsight I think it was the beginning of my MS journey because I had all the symptoms I have now.

In addition, I had cervical fusion on C4 & C5 back in ’09 after a few accidents (not my fault, I apparently have a bullseye on my car LOL) together with Thoracic Outlet Syndrome due to the presence of a cervical rib. So that mimics a few of the MS symptoms (tingling limbs, weak muscles). I’m thinking my symptoms were likewise masked by these things as well.

Mostly I am relieved that, contrary to what I had convinced myself, I am not a hypochondriac, lazy or malingering. I am *actually* sick. I’ve been beating the living shit out of myself for the better part of 2 decades now thinking I was making this all up (though admittedly I am a drama queen sometimes :accolades .

I am hoping that in addition to the downside, this is the beginning of the return of my sanity.

[Marje]

47. Dr. Terry Wahls - doing advanced MS research

You will want to know about Dr. Terry Wahls who is successfully managing her own MS and doing advanced research on the subject.

and

and

[SheilaT]

98. I had forgotten that MS is an auto-immune disease.

as is alopecia areata, what my sons have.

It seems to me that one of the most defining aspects of all the auto-immune diseases is that they are unpredictable in many ways. And that sometimes they're worse, sometimes they're better.

Here's the caveat to this sort of testimonial: Anyone who assures you they've cured themselves of their auto-immune disease by changing diet or taking supplements or whatever, is fooling themselves. They're simply one of the lucky ones for whom the systems vastly improved, despite what they may have done. If diet or supplements really were the cure, then clinical trials would show clearly show those results.

What's especially interesting about the Dr. Terry Wahl thing, is that if I google it, all I can find is her book, her testimonial, her diet suggestions. Nothing that remotely resembles actual clinical research. Just exactly the sort of pseudo-science, one case proves everything, magical thinking.

Since alopecia is what I'm most familiar with, I can tell you that with that particular condition, people may have been totally bald for years, even decades, and then suddenly begin growing hair. If they've recently tried some new vitamins or diet, they will wrongly attribute the hair growth to the vitamins or the diet. Meanwhile, they enthusiastically tell others to try what they tried and lo and behold, no one else has significant hair growth.

If Dr. Wahl really thinks what she did made a difference, she needs to get the funding for the necessary clinical trials.

[nilram]

121. Dr. Wahls has 20 papers published in professional journals

http://www.ncbi.nlm.nih.gov/pubmed?term=Wahls%2C%20Terry%5BAuthor%5D

Five of her most recent have to do with MS so it sounds like she's headed down the path you suggest.

[SheilaT]

147. I did find it a bit odd that when I googled her

the first few pages of results were simply links to her website, her book, her claims to have cured her MS with diet.

I did finally get to this: http://theness.com/neurologicablog/index.php/can-diet-cure-ms/
a critical overview of Dr Wahls' claims.

I think it's because I've come up against this sort of thing so often in the alopecia world that I'm especially sensitive to claims of miracle cures, and the demonizing of the medical profession.

[Marje]

214. I hear you...

I understand where you're coming from. I've heard of miracle claims all my life; however, if you spend more time watching her videos and reading her articles, I believe you may change your mind about Dr. Wahls. She is currently conducting a number of trials and putting her money where her mouth is. Her own personal story is also quite inspiring. She's making waves in the MS research field.

[sense]

165. I second looking into the Wahl's protocol.

If you could impact your health in a positive way by a simple diet change, why would you not try it? So much less harmful than many of the drugs you may be prescribed. There's nothing in the diet that could harm you and if you find there's no benefit, just go back to what you were eating. Too many on this page want to scream woo whenever something other than mainstream medicine is suggested. Not at all progressive. She's got a pretty incredible story. Don't limit yourself.

[Geoff R. Casavant]

48. My dad had it --

-- but I was too young, ignorant and self-absorbed to pay much attention to his various medications. He had it for as long as I could remember, so it was just the way things were. He had good days and bad days, as you will.

You may wish to reach out to William Rivers Pitt, either on DU or FaceBook -- I don't think I'm revealing any secrets to say his wife has MS. He might be a wealth of information on current medication and treatment options.

Anecdotally, I saw a documentary a while back about bee-sting therapy, but I don't think any clinical proof has ever been found. Still, if you're not allergic, it couldn't hurt to look into.

[progressoid]

50. I have a friend with it.

Not sure what drugs he takes for his. He said that the best thing for him is to not be sedentary. He found that sitting too much (especially surfing the web ) just made him slow into a spiral of lethargy.

Of course having a kid keeps him pretty active so that helps. And from what he's told me it's different for everyone.

Good luck. We're all pulling for you.

[blindersoff]

52. 2010 diagnosis here

I was diagnosed at almost age 60 (late for MS dx). My only symptom was a loss/dulling of vision in my left eye (which I thought might be a retinal tear). Ophthalmologist said I had optic neuropathy and ordered an MRI (since I had had breast cancer ten years prior, he wanted to rule out any brain masses). MRI came back with multiple lesions that could be consistent with demyelination.

I was referred to a neurologist (MS specialist) who ruled out all sorts of other diseases (lyme was one of them) and then said that I was consistent with MS diagnosis. She referred me to the McDonald criteria (http://emedicine.medscape.com/article/1146199-workup#c8) which is used to determine whether a person can be definitively diagnosed with MS or not. She started me on a DMD (disease modifying drug) and I have been on it for the past 5 years without difficulty. It is strongly suggested by most neuros that a person be on some sort of DMD (even though many of them are only 30% effective in preventing more damage).

I have never had an exacerbation during this time and only have a bit of vision deficit, tremors, tingling and some spasticity in my lower legs/feet. So I am hopeful that this is as far as it will go ... BUT MS is a sneaky disease and one cannot assume because there are no major issues right now that it will stay that way. Some people have a mild course and others not so much -- no prediction!

A good place to go online for general information is MS World, which is a forum of people with MS, discussing all sorts of MS related issues. See http://www.msworld.org/forum/index.php .Good luck and keep your chin up. It is very scary at first and I thought about it all the time and whether I'd be in a wheelchair eventually. But after 5 years, I'm still doing well and have come to terms with it.

So read a lot and stay as active as you can. Good luck to you.

[dorkzilla]

63. This is great information - thank you SO much!

The DMD you take...its it injectable or oral? if the former, are these types of drugs readily available (can I just go to my pharmacy for it)?

[blindersoff]

84. IM injection

I have been on Avonex once a week for the whole 5 years. At first it was a regular IM injection (which my husband, the nurse, did for me because I just couldn't bring myself to do it) and then they offerred an injectable pen, which I've been doing for the past 3 years -- easy peasy. Avonex can be associated with flu like symptoms at first, fever and body aches and chills, but that only lasted (for me)for the first few months for about 12 hours the day of the injection.

Choosing the right DMD for you is a very individual thing. You can choose injectables that are daily, twice a week or once a week; also monthly infusions and of course the oral ones. You really have to look at all the charts and reading materials for the different ones (did your neuro give you handouts from all the available DMDs?) and then choose according to which side effects you are most willing to endure (possibly), the schedule of adminstration and the effectiveness. I was lucky because my husband is a nurse and he had a very logical way of looking at all of them together and helping me to determine which one was best for me.

Avonex is expensive (as are the other injectables - don't know about the orals), (Avonex full cost is over $5000/mo) depending on your insurance coverage and usually is sent monthly via a specialty pharmacy. My copay went from $40 to $150 when I changed insurance at work; I called the drug company and they put me on their copay assistance program -- I now have a $0 copay (at least till Medicare starts and then who knows). Just shows you how big the markups are on these drugs... but that's a different issue.

[ProfessorGAC]

77. I Could Just Cut and Paste Your Story For Mine

Earlier than you (age 39 and 20 years ago) but the eye thing, the opthomolgist, MRI, then to neuro, the whole deal.

Our experiences are nearly identical.

[blindersoff]

85. I feel pretty lucky

I don't have many of the deficits that other MSers have. I may have had it for many years prior to diagnosis and not realized it. I'm just plugging along and doing as much as I can.

I do get more tired quickly and have tinnitus and some vertigo occasionally... but other than those and the other minor things I mentioned above, I'm lucky!

[ProfessorGAC]

106. I'm There Too

Just last Sunday, i shot even par for 18 holes at the little course i play out in the boonies. And over the winter i bowled in two short season Saturday/Sunday morning leagues and was well over 200 in both leagues. And, i think i've missed maybe 25 days of work because of it in 20 years. I even traveled 18 to 24 weeks a year for my job until about 4 years ago when i took a different position because i didn't want to travel any more. It wasn't the MS, though.

So, we're both in a pretty fortunate place.

[geardaddy]

53. I'm so sorry to hear this

Take care of yourself. It must feel like a punch in the gut.

[dorkzilla]

64. That’s pretty much how it feels, geardaddy!

I thought the dizziness had to be stenosis or something (I’ve got a dodgy neck). I was prepared to hear a lot of things but the thought that I had MS never even occurred to me.

[malaise]

54. Here's what you need

I have a close friend with MS - she's had it for over 10 years and manages it very well - she travels every year and is careful with her diet.

[dorkzilla]

65. Aw, malaise, you always know the right thing to do :)

I’ve got a lot to learn about it but stories like your friends help me not to despair too much. Thank you!

[Downwinder]

55. Everybody's path/symptoms are different.

Mine showed up in the 80s, but "Was all in my head." Diagnosed in the late 90s and on interferon (Betaseron then Rebif) since. At its worst i could not walk, talk, or see. Until this spring when my back went out I have been inline skating for exercise.

My effort was to reduce stress. Stress from the immune system attacking the CNS. Stress from schedules and appointments. Everything I found stressful. There was a Dr. here from the Cleveland Clinic with MS, said he came here to get away from the stress. He was playing golf well into his 90s.

[dorkzilla]

68. Stress - this is going to be the hardest part for me...

I just opened a restaurant 15 months ago. Its doing well, but far from financially self-sustaining yet, but my stress levels are off the charts with worry. I have a lot of people-my wonderful staff- counting on me to help them raise their families, pay for school etc and I sometimes lay awake sick with worry that if I make any wrong moves, I’ll go under and they’ll be out of jobs.

Stress. Phooey.

[Downwinder]

86. Might be why it is showing up now.

Have to take a Market Basket approach and offload some of that responsibility. People will pick up the slack.

I may be being to flip. Most of my MS has been cognitive.

[dorkzilla]

89. I’m having a lot of cognitive issues too

Before yesterday I thought I was losing my mind because of all the shit I was forgetting, and forget about executive functions. I mean I’m still way ahead of most people I know but I believe that is because my ability to plan and prioritize was honed at a very young age as a secretary working for some C-level, high profile, hard core NYC businesses. I kept thinking “i did this for other people for years, why can’t I do this for myself? I must be lazy or crazy now”.

You’re right though, I’m going to have to hand down some of my duties to others right now.

[Downwinder]

92. Lists and notes are recommended,

smart phone is excellent. We have temporary memory registers which are subject to damage. Choreographing your movements will help with vertigo and balance. Depend on your vision and stay in lighted areas.

[dorkzilla]

93. I do that...then forget where I put them :)

[Downwinder]

94. Get a bluetooth ear piece on a smart phone or tablet.

Last edited Wed Jul 22, 2015, 03:52 PM - Edit history (1)

Use the scheduler. it can be synced with a computer.

Dictate to Siri.

[Arugula Latte]

58. I'm very sorry. I know several people with MS.

Two are very close friends. They got their diagnoses about a decade ago, and they both take a drug (Avonex) to help control it. As people have said, MS is very unpredictable and very variable. With these two friends, though, you would never know they have MS. They both carry on with high-powered jobs. I know one gets very tired, but she also has two demanding young kids (and work) so that might have been the case anyway.

I wish you luck.

[TNNurse]

60. My two cents

Pay attention to others who have also been diagnosed.

Decide if you trust your MD and stick with a plan
.
Stay away from Google and other search engines. There is a lot of ignorant crap out there.

This is what I did when I was diagnosed with breast cancer and I am not sorry.

Personal experience counts, do not pay attention to " I knew someone who....." Go to the source. You already have some offers here.

I worked in a hospital, when I went back to work after surgery/chemo/radiation, medical people would ask me "what was it really like?" My answer was always the you have no idea unless you have experienced it or lived in the house with it.

I wish you well. Let people help you. Believe you can manage this. Please keep us posted when you want to do so.

[dorkzilla]

70. Thank you. You’re a smart lady!

I’ve only so far gone onto “official” sites - I am reluctant to go even into support groups because the one and only I looked scared me off (there are a lot of weird people out there!) so I’m going to wait to talk to my doctors about a few other things before I get to that point.

Hope you’re doing better!

[TNNurse]

78. I am fine thanks

I have some long term residual effects but they are manageable. They are both permanent and temporary, irritating but tolerable. You will have some crappy days....but not all will be.

I only looked at websites that other breast cancer people recommended and really only pay attention to one.

It sounds like you are remaining fairly calm, that is really, really really important.


Wish you well...

[dorkzilla]

79. Funny, that!

My dad is visiting and just this morning he said “well, honey, all I can say is you’re acting really rationally with all this. I don’t know if your inside is as calm, but if not, fake it till you make it”.

All i can do is be calm. Freaking out isn’t going to undo any of it, and I don’t know enough about what’s ahead to panic about what’s ahead. i can only react to the here-and-now.

I’m tired, sad and puzzled by it all but I’m immensely grateful that I know what it is now.

[ismnotwasm]

61. My husband has lived with it for 30 years

We'd be very happy to answer any questions you have.

[dorkzilla]

71. Thank you! That’s very generous of you to offer and I may take you up on that! nt

[raccoon]

66. I'm sorry, dorkzilla. nt

[dorkzilla]

72. If you’re so sorry why do you keep going into my garbage cans, raccoon? LOL!

Seriously, thanks. Gotta laugh, if I don’t, I’m just gonna cry

[msanthrope]

67. I think you live not too far away from me. if you ever need anything

let me know. I will keep you in my thoughts.

[dorkzilla]

73. Where (generally) are you?

That’s incredibly nice of you to offer.

[msanthrope]

117. Westchester County...... and I'm serious if you need something just PM me. nt

[dorkzilla]

120. Thank you so much for your very kind offer!

I will, neighbor!

[riderinthestorm]

74. Take some deep breaths. I have no advice and no sage words

I don't have anyone close to me with this disease so I can't even begin to offer anything but hugs and a listening ear whenever you need it.

[dorkzilla]

76. That’s the best therapy anyway!

BTW that’s why I’m struggling too. I have no one close to me either with this except for my uncle’s wife who just died from it a couple of months back. Thing is they’re in Ireland, I only see them every other year and being Irish, you know they don’t talk about unpleasant things. No complaints, no “Auntie Monica is having X therapy right now...” kinda thing. And I can’t ask my uncle about it, he’s still mourning deeply and only wants to talk about positive things (which I totally get). I know if she were still alive and I told her I now have it she’d open up in a second but my diagnoses came 8 months too late for that.

Anyway, thanks.

[blm]

81. Medical Marijuana can stop the progression if caught early enough….

Canada has been open to this, esp for MS. I researched it when my niece had it - hers was an advanced case and she passed away a couple years ago.

This 2012 article in HuffPo may be useful to you.


http://www.huffingtonpost.com/2012/05/14/medical-marijuana-multiple-sclerosis-cannabis-spasticity_n_1515692.html

[dorkzilla]

88. So so sorry about your niece.

How old was she when she was diagnosed? When do you suspect the onset really was?

[blm]

113. diagnosed in her late teens, passed when she was 38.

When the research came out she was too deteriorated by then and only used marijuana for comfort in her last few years.

[sir pball]

83. My sister was diagnosed about six years ago

She'd had vertigo spells and occasional limb numbness for years but thought nothing till it all started happening more frequently. She immediately went on the routine of near-daily injections (I don't know what the drug is, sorry), and has been literally healthier than ever since then with the exception of her pregnancy - couldn't do any meds so she got a little rough but was right as rain within just a few months after resuming.

Her key was catching it relatively early; her prognosis right now is pretty much open ended as long as she maintains treatment and reasonable physical fitness/activity - she's actually stilk an assistant cross-country&track coach at her high school. Here's hoping you're in the same boat with her!

[DonViejo]

87. I have MS, diagnosed in 1989 after seven years of visits to one doctor or another...

I have the relapsing - remitting variety. I retired from my job in 1994, primarily owing to the level of fatigue I was experiencing and my ability to walk was becoming more difficult. I get around now using a cane, cannot stand too long (5 mins at best) and my fatigue level just soars if I try to do any yard work or even household work. If I go to the grocery store, Home Depot, etc., I make use of the little motorized carts. All of that said, my husband and I did manage to raise four sons. There are alot of good medications for MS now, I hope you have a really good neurologist.

[myrna minx]

90. Hang in there.

[benld74]

91. The only 'true method' to determine MS is the spinal tap

and checking the fluid which is removed. I had this done in '97 and have been living with it since then. Relapsing/remitting is what I have and have been doing the Avonex weekly injection now for some time. Take care and follow DR advise but DO NOT be afraid to question constantly. Once you find something that works STAY WITH IT, DO NOT SWITCH.

[arikara]

95. Here's the link to a book that might help

I knew the author personally, he was a university professor and a great man.

You can either order the book or download it either free; or make a donation to his foundation if you can afford it.

What really causes multiple sclerosis
http://www.hdfoster.com/publications

[steve2470]

96. many good vibes to you!

[nadinbrzezinski]

97. Hugs

and a shoulder if you need it.

[dorkzilla]

100. Thank you

can’t ever have enough hugs or shoulders

[nadinbrzezinski]

101. hugs

[Ex Lurker]

99. If it's any comfort to you, it's not necessarily debilitating

My cousin's husband has MS. Some days are better than others, but it doesn't keep him from leading a fairly active lifestyle, including travel. Best wishes

[dorkzilla]

104. If I thought I couldn’t travel anymore, I’d off myself

It’s my great joy in life. Either that or move to that country

[Liberal_in_LA]

102. sending you good vibes

[Kingofalldems]

107. Praying for you dorkzilla.

[LittleBlue]

108. It was bad for my mother

But that was before modern medicine. I recall she had late onset and the disease processed rapidly. It all depends on the agressiveness of the kind you have.

It wasn't pretty. I don't keep up with the disease since she died (unrelated to MS ) but family members who do say it's a shame she got it 20 years ago because new drugs show improvements.


Good luck

[dorkzilla]

109. those are the stories i remember hearing growing up

I know times are changing but you can’t help reacting out of fear when you hear someone say “you have MS”.

[TBF]

110. I have two autoimmune diseases

and I'm under 50. I understand the feeling of being overwhelmed. It sounds like you're doing the right thing - reaching out to others. There's a lot of info online (sites like Mayo Clinic etc). I wish I knew specifically about MS but I don't have experience with that. Hoping others will PM you who are in the same boat and can give you some info and encouragement. ((Hugs))

[mr blur]

112. I've had MS for 17 years, you can PM me if you like.

[beam me up scottie]

114. No advice, dorkzilla, just good thoughts for you.

I am so sorry to hear this, my ex married a woman with MS, it's a terrible disease.

I'm sure you'll have strong support from your family, and just know we're here if you need to vent.

[dorkzilla]

115. Thanks bmus

I have a great support system so I’ll get through it. I just hope its not the worst kind. That would suck.

The funny part is that there is a RW Facebook group that my mother admins and they’re all praying for me. I said “Mom, do they know I’m a liberal atheist? Cause I don’t think what they’re doing is praying...”.

[beam me up scottie]

116. LOL! I love playing the atheist card.

To the people who just have to tell atheists they're praying for them:

Prayer: How to do nothing and still think you're helping

[dorkzilla]

118. LOL! Well in their case I don’t even think they think they’re helping

They’re probably chanting some sort of bronze-age spell to make sure I get cancer too.

[beam me up scottie]

122. That bad, eh?

Just make sure they're not allowed to visit you if you wind up in the hospital, my ex mil and her fellow preyer vultures came at me when I was most vulnerable.

Hags.

A nurse read them the riot act and they never came back.

[dorkzilla]

124. They’re 3000 miles away so...

no chance of that happening!

[beam me up scottie]

126. You have the right attitude!

And in case I haven't told you lately,

[dorkzilla]

128. It helps to be a little crazy

and a rightbackatcha

[Nac Mac Feegle]

140. I got some of those when diagnosed with prostate cancer

I told them that I'd become a devotee of The Flying Spaghetti Monster. And, given the location of the gland, the bit about Noodly Appendages made me a bit ...uncomfortable... shall we say. They either laughed or got offended. Either way was a win for me.


I turned up with one of the 'acronym diseases' myself though: MG. A bit further down the list, but I can relate to a LOT of the things said above. Especially the difficulty in diagnosis part. The worst part was knowing that something was wrong, but not what it was. When you get a name on it, you put a target on it. You can treat it. Knowledge/information is power. The not knowing was the worst. Medicine has advanced exponentially in the last few decades, and things that were fatal a few decades ago are manageable now.

I saw a T-shirt on an online gun-humper site that said: The mind is the ultimate weapon. Everything else is just an accessory. That philosophy can be easily extended to a lot of situations. Use your mind to plan out your course of action, whatever it is. That means getting the most information about condition and choosing the best treatment course, in one aspect. It may not be easy, but keep your goals in mind and plan how to get to them.

Again, knowledge and information are powerful tools. Get the best you can find.

Peace and good fortune. There are people here that will help.

[beam me up scottie]

142. Lol! That's funny.

Good for you, humour is much more beneficial than prayer, imo.

And that's some damned good advice, not knowing makes you afraid of everything.

Did you mean to respond to dorkzilla, though? All I've had is Lyme Disease and it's long gone.

Maybe you should link to this post to make sure they see it.

Peace and good fortune.

To you as well.

[Jack Rabbit]

119. Condolences and best wishes

[ladyVet]

123. Just wanted to add my sympathy.

I'm sending you a big bolt of "woo" (AKA healing energy) to help out a little.

I love your attitude, it's very inspiring for me since I've been having some rough times (nothing a serious as MS) lately and feeling a little bummed.

[dorkzilla]

127. Thanks!

I get bummed out from time to time but I find, for me, a daily dose of giggles will set me up for the day. I try and read something funny or remind myself of a joke I’ve heard that made me laugh. I tend to see the world through goof-colored glasses...it makes the really hard times easier to bear. I also try not to look at issues in the long-term, just tackle one issue at a time, one day at a time, and before you know it you’ve gotten through your rough patch. Works, for me, like a charm.

Just keep telling yourself, whatever it is, I can handle it.

[veness]

135. Best wishes to you ladyVet.

May you stay inspired and sail thru rough times easier.

[spanone]

125. k&r...

[SHRED]

130. Cannabis Treatment Info

http://www.safeaccessnow.org/multiple_sclerosis_booklet

==

[silvershadow]

131. I have MS, and have had vertigo episodes dating back to the 1980's.

I am so sorry to hear about your diagnosis. Prepare for lots and lots of reading. Find a support group. Mine is a good one, and I have made lots of friends there. You can learn a lot by going to drug-company sponsored dinners in your area if you are so inclined. We go because of the free food (good restaurants), and of course they have a program to present, but that's ok. You can learn, ask questions, etc. Thus far dubious claims on the internet: CCSVI. Don't get all bogged down looking for that, or stem cell stuff, believe me it is all over the internet. Just focus on what your doctor tells you, and what you can learn. Each person's MS is unique, though we do share similar symptoms. Good luck, Godspeed.

[dorkzilla]

138. I’m trying to stay off the internet, but the internet is coming to me LOL

My big brother just sent me a link to the CCSVI/Dr. Zamboni stuff. He also told me about goat milk. I love him but he’s an Alex Jones fan. He’s trying to be helpful, dog bless him!

Good advice, but i gotta ask about drug company dinners. I’ve never heard of such a thing. Do you get invited via your support group?

[DFW]

132. Here's wishing you a lot of serious, bigtime...

REMISSION!!

[dorkzilla]

169. That would be awesome!

If not, I got plenty of books I’ve wanted to read

[azmom]

133. I use cannabis for chronic pain,

Good stuff. I wish I had tried it sooner. Best of luck to you.

[Glassunion]

134. I could fill a post full of, "hang in there", "it's not that bad", "think positive"

But you are going through your own little version of hell. You got bad news, but now you have to wait to find out how bad.

That is rough, no matter how you slice it. I don't envy your struggle.

It's rough.

What I do know, is that us Humans are tough mother f%#*€rs. We are resilient. We are optimistic in the face of the unknown. But we are flawed. Our flaw is worry. It is a waste of imagination. I think it was Mark Twain who said - "I've lived through some terrifying things in my life, some of which actually happened." I can agree. My own mind has dealt out more of my fear than anything that has actually happened to me.

Right now you're worried. But it's in your head. I cannot help you beyond recognition of that fact. I used to suffer from anxiety, which to me was a perpetual state of worry. Everything was stressful, as I felt overwhelmed by everything. I sought help, and what I found was writing down my fears, helped abate them. Sharing them made it even easier.

You're among friends here. Write away. Whatever is eating at you, causing your worry, write it down. Share it if you choose. We'll see you through whatever worries you have. We all have to walk through hell at some point in our lives. The beauty of it is that it's a much easier walk if you have friends help you through it.

I think that Liverpool football club says it best... Post away, let us lend a hand. And always...

[TheNutcracker]

136. medical marijuana wiil help LOTS. A certain strain. Go to CO

[eridani]

141. There are so many possible outcomes--hope people with some experience have good feedback

[Thor_MN]

143. Breath. Read. Contact the MS Society.

It's not a sirens and lights to the ER thing.

I've ridden the Minnesota MS 150 the last 6 years and have known several people with MS. My high school friend, who had an advanced case, finally got into a trial this spring for Lemtrada. Unfortunately, he had a negative outcome that is not listed as a side effect of Lemtrada and passed two weeks before the ride. Still working through emotions and glad I'm typing rather than talking.

So no sugar coating here... I really think that he must have had some other health problem going on as my reading indicates what happened was not a direct result of his treatment.

One of my Grandparent's neighbors had MS and I later worked at the Nursing home where Mildred lived. She was one of the most beautiful and nicest persons I have known in my life. Her MS really didn't affect her outlook on life.

The daughter of my neighbor across the street has MS and I never would have known if they hadn't noticed that I was getting ready for the ride.

[AtheistCrusader]

146. Live in the PacNw?

What were the earliest symptoms that made you suspicious.

[dorkzilla]

148. Hey there AC!

No I'm just north of the Big Apple, in the lower Hudson Valley. Started with vertigo, really bad episodes, when I was in my early/mid 20's. Then the numbness and tingling in my limbs, but all the time with vertigo. I felt like a crazy woman.

The cognitive stuff is happening now too.

[AtheistCrusader]

186. We have a higher than normal incidence of it here in the NWpart of it is genetic

Like you alluded to with your family, but part of it is thought to be environmental. They're not sure why. Vitamin d deficiency comes up a lot in discussing it, but not been proven. We get even less sun than the latitude would suggest due to cloud cover.

There's a lot of research effort here, because it is higher than average.

[dorkzilla]

189. MS tends to run higher in people of Northern European descent

And like you said, it could be a D deficiency but it could be in our Neanderthal genes. I’m Irish (mom is 100%), English and French (with some Swedish Dutch and Polish thrown in for good measure...my dad’s side come from Mayflower stock so there are so many different genes there). So genetically I’m screwed.

It will be interesting to see if they actually find the root cause.

[AtheistCrusader]

197. I'm guessing ultimately it'll be multiple causes, or multiple factors driving a cause.

It's a shame we know as much about it as we do, but the exact mechanism and how to stop it eludes us.

Hopefully not long now.

[1monster]

149. I know several people with MS. One has lived with it since the mid '80s.

You can live a nearly normal life and there are better treatments and prospects all the time.

Keep positive. A positive outlook can make a huge difference in your quality of life.

Good luck.

[Ilsa]

150. Hugs and peace to you.

I'll be thinking about you.

[Cane4Dems]

151. Very sorry to hear! Hang in there

I'm just a 3rd year medical student but one advice I can give is to make sure that you don't overwhelm yourself with the amount of info that is available online.

Make sure to only search scientific articles from reputable sources because a lot of the other sources will just give you false non scientific based advice that won't help you.

Also I know it is easy for me to say this sitting behind a computer but don't give up! A lot of strides have been made in the treatment of MS. Also make sure to have your doctor explain everything to you in detail- even if they are acting like they don't have the time you have every right as a patient to have them spend extra time with you. Ask your doctor about any clinical trials and whether he thinks you would be a good candidate for them (depending on your stage of disease)

I think connecting with a support group is a good idea because a lot of times i see patients who find a certain doctor simply because they asked around the area and were able to find someone who everyone likes/trusts.

I'm not that religious of a person but I will say a prayer for you tonight!

[CountAllVotes]

152. Have had MS for many years

I still manage some how but I'm getting old.

Never been on any of those very pricey drugs so I can't suggest any of them to you.

Do your own research and decide what is best for you.

Don't let them talk you into doing anything that you do not believe is good for you and/or correct.

They DO NOT KNOW multiple sclerosis is.

Remember this sad fact no matter what you are told.

Best of luck and try not to panic. Life is not over yet.

[LostOne4Ever]

154. My mother has end-stage MS

[font style="font-family:'Georgia','Baskerville Old Face','Helvetica',fantasy;" size=4 color=teal]She was diagnosed with MS back when I was 12 years old in 1995.

She went to the Scott and White Clinic in Temple Texas for a bad knee she was having trouble with(she had torn all the ligaments in it years ago) and a low grade fever that would not go away. While there one therapist was examining her knee and told her that the problem she was having was not the ligaments and sent to her to neurology.

They ran a bunch of test and a spinal tap and diagnosed her with Multiple Sclerosis. My mom has been managing it ever since then.

Most people diagnosed with the disease start out as relapsing remitting (where they have periods where they get better and worse) and eventually develop into chronic progressive (where they just get worse and worse), but she started out chronic progressive from the beginning. Within a year or two she lost the ability to walk. Currently her left leg is completely paralyzed and can barely move her right leg or left arm. One area where she has been lucky, is that it really hasn't affected her vision, but a stroke a year or so ago really hurt her there.

Most people with this disease fight with depression, but my mom has always remained positive. She accredits a strong family support for her positive outlook.

She takes Baclofen and Tizidine for her muscle pain, gabapenten for her nerve pain, and amanadine for fatigue. It seems to work well. When she first got diagnosed they put her on Betaferon injections. They did not help much. She tried a variety of different drugs and none of them provided much help.

Finally, they put her on some chemotherapy drugs which helped alot. In particular, she benefited from Mitroxantrone but they would only keep her on that for 2 years. Afterwards they moved her to methotrexate which not only slowed her progression but helped her with her arthritis

She used that for many many years until just a few years ago. Her Neurologist (we have been through many of them) at that time wanted to get her off methotrexate and get her started on Avonex. They decided to give her both and it worked really well and from there we stopped the methotexate altogether.

She has been very stable and our current neurologist ran an MRI just a month ago and said that not only do her nerves look less scarred, but appeared to have healed some. Of course he cautioned us that all they could see was the outside of the nerves and the insides could be a different story.

I should also mention that she added in a bunch more apples and raisens into her diet and she feels that has contributed to the good MRI scan.

Hopefully, your case won't be as severe as her's has been. That said, I am not going to lie to you and say it is an easy disease to live with. It is a very hard disease. But it is not a deadly disease (in and of itself), and with the right support, it is manageable and it is possible to have a fullfilling life. Don't give up you can make it through this.[/text]

[blondie58]

155. Welcome to The Club!

The Club you don't Want to be a member of.
I Joined 7/9/1999. That was d-Day. Totally unexpected.
Being an Optimist, i remember thinking- well, at least its not a fatal disease.

16 years in i have come to realize-
Doctors can't explain it. And don't Really know what to do.
I see a Neuro now that Has ms himself. So he is very wary of the new drugs that come out, äs they havent Really Been tested.
The First oral one that came out, Gilenya Had Some Really Bad Side affects.
It is good to Get on a medication, preferably One That Has Been On the market for awhile. The Sad fact is- just because the fda approved it, it doesn't Mean it is Safe.
My Neuro's drug he likes is Rebif and the only oral one that Has Been out long enough to Trust is Aubagio.

I did rhe Jimmy Heuga can do program a few years ago. If You're not familiar with him, he was an Olympic Skier who came down with ms at The height of his career.
The doctors Told him to go Home and rest, which he did for a few days and then thought this is bull! So he started exercising. And he felt better.
It is Better to keep moving.
If you have an questions or concerns, please feel free to ask us.

Good luck on your path in your life. 😼

[dorkzilla]

168. I plan on going for a very long walk today..

I live very close to the Rockefeller State Park (I met President Clinton walking there once when he was still in office!) and it is a glorious place to walk in. Lots of woods and meandering paths that cross beautiful meadows packed with livestock and your reward for walking to the highest hill there is the most beautiful view of the Hudson River. All so perfectly preserved that you could swear you’d be likely to run into Washington Irving out for his daily constitution instead of Bill Clinton. Its also a big destination for carriage enthusiast and you’ll occasionally see the aging Rockefeller brothers out on the trails with their own trap and pony.

Anyway, enough waxing rhapsodic, thank you for the information, and I think the drug information is the most important stuff for me to concentrate on at present.

Thank you for sharing and for your good wishes.

[davidpdx]

156. I am sorry to hear you have MS

I know virtually nothing about it, but I wish you the best. It sounds like you have lots of people for network and support on DU.

[mikehiggins]

157. This is bad but less so than years ago. Take heart.

My wife and I have no idea who you are but you are in our prayers.

I'm fairly certain God isn't confused by your webname. She'll know who we're talking about.

[dorkzilla]

170. “She’ll know who you’re talking about"

That’s awesome! Thank you.

My nom de guerre is a lot more unique than my first name anyway (Alison) so there will probably be a lot less confusion on the part of the Almighty trying to seek me out.

[Stellar]

159. My cousin has had MS for the past 30 years.

She will be 65 at the end of the year. Linda didn't care for herself as well as she could have in the beginning, so she's not walking now. She could stand more therapy to make herself a little stronger...but her spirits are up and she's doing as well as she can now.

I know Montel Williams has had it for awhile now....

He's the guy on the far right.
http://www.cleveland.com/popmusic/index.ssf/2010/05/walter_williams_of_the_ojays_o.html

Also Walter Williams of the Ojays has had it since the 1980's, and all the fancy footsteps they Ojays did as part of their routine, he said was difficult but he kept up with it, even today.

The last video is of today at the bottom.
http://www.cleveland.com/popmusic/index.ssf/2010/05/walter_williams_of_the_ojays_o.html

[caraher]

160. My wife is being checked out for MS

Her cousin has had it most of her life and has managed reasonably well. My wife just had a spinal tap Monday; we haven't heard any results. This followed an MRI and some blood tests. Her symptoms are fairly mild and she's on the old side for a diagnosis (late 50s; it usually hits at a younger age).

Best of luck to you, dorkzilla - it's nice to see lots of others here with some experience of the disease who are managing well and happy to offer support!

[roguevalley]

161. I don't have advice but I have hugs. You are in my thoughts. Things have progressed. I have

great hope and compassion for you and yours right now.

[Not a Fan]

162. MS is a Latitude Sensitive Disease ...

... and that points firmly to Vitamin D3 deficiency.

Geography in multiple sclerosis.
Kurtzke JF.
Abstract

Both mortality and morbidity data indicate quite clearly that multiple sclerosis is a geographically-related disease, and thus MS can be thought of as an acquired environmental (exogenous) illness. High frequency parts of the world for MS are Europe between 65 degrees and 45 degrees north latitude, northern United States and southern Canada, New Zealand, and southern Australia.

http://www.ncbi.nlm.nih.gov/pubmed/67196

World Map of prevelance of MS.

Medical studies have shown - depending on the severity of the disease, Vitamin D3 has a positive impact on the progression and severity of the disease.

You have chronic VD3 deficiency or you would not have MS. You want to raise your blood serum levels VD3 (not VD2.)

The Vitamin D Council has good information on this. They are a nonprofit advocacy agency.
www.vitamindcouncil.org

Their FB page is good with an informed and helpful community. There is also an assortment of medical professionals there (just as members - not as consultants) - but overall the group can give you good advice going forward. I am not suggesting you ignore your doctor.

You will need to know your VD3 blood serum level - has it been tested? if not you want to have it tested. This is information you will always need to monitor now. The Council sells home test kits for a reduced price, but I'd be shocked if your doctor hasn't already tested you. You should talk to them about this if not.

I can give you more information and advice if you want it - but now you mostly need to search out the copious numbers of studies on this and start studying to take your health into your own hands.

BTW - High quality VD3 is available in stores, but it is dramatically lower in cost on the internet.

Good luck.

[lady lib]

163. You might want to read Dr. Terry Wahls' book

"The Wahls Protocol." Her story is inspiring and you might find her dietary suggestions very helpful.
I have an autoimmune disease as well, but fortunately it's one of the less serious ones.

Good luck to you.

http://www.amazon.com/The-Wahls-Protocol-Progressive-Principles/dp/1583335218

[dorkzilla]

171. Another poster upthread also recommended

I was skeptical when I googled her but since I’ve seen more information pop up on her. I will have to check it out.

thanks!

[lady lib]

193. You're welcome. Let me know if

you would like any cookbook suggestions. I'm on the paleo autoimmune protocol for my Hashimoto's disease. It's slightly more restrictive than Wahls' protocol, so you should be good to go with AIP recipes.

[pablo_marmol]

164. Best wishes and warm thoughts to you dorkzilla.

I have two friends with MS......and for what it's worth they are a couple of the most positive people I know.

[FlaGranny]

173. I have MS. Diagnosed about 15 years ago.

How old are you and how long have you had symptoms? Are they getting much worse over the years or staying close to the same?

I have had strange symptoms for most of my life and I'm 75 now. Diagnosed at about age 60. I think my first symptoms began in my teens or 20s. I have had periodic vertigo and lightheadedness, sometimes list to one side when I take off walking. I have occasional bouts of severe muscle spasms. Many of my symptoms are visual - seeing shadows move by out of my left field of vision (which I've finally learned to ignore most of the time).

I elected to not do medications as my neurologist felt I would not get much worse than at the time I was diagnosed. I am doing well. I go to the gym 3 times a week, have lost a lot of weight, and am in better shape now than when I was diagnosed.

MS is not always a sentence to a limited life. Sometimes its just an annoyance that you learn to live with.

Best wishes.

[ProfessorGAC]

175. An Annoyance

Perfectly stated Granny. I've been diagnosed since 2/95. That's exactly what's it has been for me, too.

[dorkzilla]

178. I will be 50 in August

Honestly I probably started having symptoms back in the late 80s in my mid 20’s. I have recurring attacks of vertigo, some of them profound and of long duration. The lightheadedness was always there which i always thought was because I have low pressure (80/60 is high for me).

I have bad tingling in my hands and feet, but since I have Thoracic Outlet Syndrome (I have a cervical rib) I thought surely that must be causing the tingling. A few car accidents lead to cervical fusion in ’09 so I didn’t understand why my hands kept tingling. 2 CT releases, still tingling.

Suffice to say I now believe I’ve been misdiagnosed for a while. Not blaming anyone especially since no one in my family has ever been diagnosed.

Lastly, I understand there is a link between Epstein-Barr and MS. There is also a link between EBV, MS and Non-Hodgkins Lymphoma, which my mother was diagnosed with in ’09 at stage 4 when she was 65. Stem cell transplant worked and she’s been cancer free since ’10. I can’t help but think that’s where I am heading.

Curse you, mitrochondrial DNA!!!

[FlaGranny]

212. I understand.

I also have other autoimmune problems. I have an autoimmune arthritis (possibly psoriatic), Sjogren's syndrome, and MS. I'm the only one in my immediate family diagnosed with any of these things.

[Liberal_in_LA]

196. glad you are doing well

[FlaGranny]

211. Thank you.

MS is a weird disease. It causes symptoms sometimes that are so strange that some doctors look at you like you're crazy if you tell them things like your tingling, seeing things that aren't there, vertigo, lightheadedness, muscle spasms, walking like a drunk, etc. Some will tell you it's all in your head. You are lucky to be diagnosed quickly, especially if your case is not severe.

[City Lights]

174. I'm so sorry to read this, dorkzilla.

Best of luck to you.

[duhneece]

177. MS Diagnosed 3 yrs ago...Trigeminal Neuralgia, too

Lyme, some weird pork virus, others were ruled out with blood tests. MRI showed demylenizing of the myelin sheath BUT the neurologist said only a spinal tap could completely be certain that it is MS, and then only if my brain was 'throwing off' myelin sheath cells that are the scarring that sclerosis refers to. Occasionally, one needs more than one spinal tap if my happens not to be having an episode then. I chose not to have that, yet.
For 100% certainty, I have Trigeminal Neuralgia which sometimes accompanies MS, sometimes not.

There was an MS diet I tried to follow for awhile, the Wahl MS Diet. I definitely try to eat healthy.

[dorkzilla]

179. Wow, that’s awful, sorry

And I hear ya on the spinal tap. I’ve had it and I never ever ever want to go there again. Worst thing I’ve ever been through.

[mmonk]

183. Good luck. I hope you get the answers you seek.

[dorkzilla]

190. Me too--I just spoke to my neuro--MORE TESTS YAY!

They’re doing 2 more tests to see how far its progressed so it seems like I’m in a pseudo-limbo until then. So I’m going to try and relax till i get the whole picture.

[mmonk]

191. As frustrating as tests are, the assessments are important.

Being relaxed is the best medicine at the moment. Keep us informed.

[dorkzilla]

192. Thank you...i will! n/t

[Arugula Latte]

194. Dorkzilla, I wanted to add something.

Obviously I'm no neurologist, but I think it is a good thing that you have had symptoms going back decades in that it is unlikely you have the fast-onset most devastating form of MS. That's what my friend with MS was told when she looked back on symptoms starting in her 20s.

[dorkzilla]

195. thank you for that affirmation; just what i think

i went back into my old emails from 10+ years ago and there are lots of emails from me to my mom and bffs about bothersome symptoms that point to this beginning at the latest, in my early 30s.

but the 4 new test next week should see how far along its progressed.

thanks AL

[Arugula Latte]

198. You're welcome.

Sending good thoughts your way.

[duhneece]

201. "Indolent MS" is what my neurologist called it

When he diagnosed me probably as Late Onset Indolent MS, I was 61. 'Indolent' was the most beautiful word to me; if you have to have MS, Indolent is the good kind to have, I reasoned.

[Arugula Latte]

202. Indeed!

The lazier the MS, the better!

[Dont call me Shirley]

199. Do green juicing or green smoothies. Detoxify your body. Get off all grains and processed foods.

Watch your supplements, many are made of gmo corn, and get off all gmos. Eat organic vegetables, fruits, nuts, meats. You can heal from doing this. I have lupus, fibromyalgia, diabetes 2 I am healing with this lifestyle change. Try the Paleo Auto-immune Diet, GAPS Diet, the SCD diet.

http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol

http://www.gapsdiet.com/INTRODUCTION_DIET.html

http://scdlifestyle.com/2010/03/the-scd-diet-and-leaky-gut-syndrome/ (many auto-immune disease originate from a leaky gut)

This is a radical change but worth the effort.

[dorkzilla]

203. I’m looking into the diet aspect now

I have never eaten processed foods, grow a lot of my own (weather permitting) veg, buy organic most of the time etc. The ONLY thing I think I will have trouble giving up - not booze, not coffee, not sweets - is dairy. I’m a cheese freak. I think I was a mouse in another life. But I will give it a go.

If its a more advanced variety, I’m going to start smoking cigarettes, maybe knock over a bank and turn into a junkie. Just cause.

[Dont call me Shirley]

209. My Dr was so proud of me today, that it got my blood sugars normal in only one month!

From 183 to 94 in one month. It's the sauces, supplements etc that are made of gmo corn that's the culprit. They cause leaky gut and once that happens, it's all manner of auto-immune diseases.

http://www.livecornfree.com/2010/04/ingredients-derived-from-corn-what-to.html

The SCD diet works to heal leaky gut.

You don't have to be on these diets forever. In the beginning it's really restrictive, but as you heal your gut you can add more.

Bone broths, natural meats and fishes, fermented vegetables, lots of vegetables raw and cooked are the basics.

Good luck, dorkzilla. Let me know how you're doing.

[dorkzilla]

210. I was just reading the SCD link you sent

It’s been a really really weird year for me physically...I also discovered last fall that I had H-Pylori and a plethora of related intestinal issues. So I googled h-pylori and MS - - turns out h-pylori is thought to protect people from MS.

So there goes that theory.

But I am going to have to pull out my medical records to see what else they found when they did my endoscopy. Perhaps there is some link between my gut issues and the MS. We will see.

Thank you for all this information. And BRAVO on getting your blood sugar down!!!

[Dont call me Shirley]

216. Thanks! Very much luck with your quest for health. It's a body mind and soul thing too.

[KamaAina]

200. One of my old bosses has MS

one of my favorite human beings. And she had a really cool service dog, a yellow Lab named Stanley!

As it happens, I'm visiting Mom and Republican Stepdad for the next couple of weeks. We're down at the Jersey Shore now, but will return to the city around midweek, if you would like to talk to someone who has worked in the disability field for 15 years (!).

[dorkzilla]

204. Mom and republican step-dad? I got those too!

Love them to bits but when they say things like “that Sarah Palin, she’s a smart cookie” I wonder about their judgement. Then again, if they think Caribou Barbie is a smart cookie, they must think I’m a friggin’ genius.

Service dogs! I forgot about those!! I wonder if I can train my 2 spoiled shelter dogs to make me a pot of tea?

Thank you for the offer - enjoy your time at the shore. I really wish I could get some shore time in. My friends have a little place in Fire Island they’re trying to get me to visit on the weekends, but right now I feel too emotionally fragile to spend anytime away from home, my sweet husband and my pets.

[KamaAina]

207. No, Mom is a centrist Dem.

Somehow they manage to make it work. It might not have been so easy back when she took me on her shoulders to a McGovern rally in '72.

[dorkzilla]

208. My mom is only a Republican because my step-dad is

Back when she was married to my (still) liberal dad, she was a liberal. Go figure. I love her to bits but she’s never been much of an independent thinker.

[Marje]

213. Dr. Timothy Noakes - My Medical Epiphany

dorkzilla:

Still thinking about your post and I found another good article that you may want to read. It is by Dr. Timothy Noakes and discusses MS among many other things.

HTH,

http://www.thenoakesfoundation.org/2015/profs-words-my-medical-epiphany

[dorkzilla]

215. Thanks Marje!

I can’t get the link to load after several attempts and google will avail me nothing

Can you summarize?