Call is in from the doctor.

[Lady Freedom Returns]

She says I need Togo to a specialist. She says I have an autoimmune diseases. Had to go look up how to spell it.
She says she can't tell me what type. That scares me. What am I looking at? Going to read up and get some Idea.
She also said that job hunting might want to wait till we have an Idea what we are dealing with.
So right now, can't walk without risking a fall, can't fell my right hand, and am seeing double. How the heck am I supposed to make a living?
Yes, I do have a GoFundMe, but that's not going to make enough. What the heck am I supposed to do?

[lunamagica]

1. I'm so sorry tou are dealing with this. K&R for visibility

[Lady Freedom Returns]

13. Thank you.

[matt819]

2. Not a doctor

Here's a link from Google (who needs a doctor when there's Google?) re autoimmune diseases: https://www.webmd.com/a-to-z-guides/autoimmune-diseases

Basically, could be anything. Some irritating, others awful. And I think your doctor was cavalier about telling you you have an autoimmune disease without any reference to your particular situation or what kind of specialist she is sending you to. It's kind of like a doctor telling someone to take it easy for six weeks while you heal after some procedure, without recognizing that "taking it easy" means not earning an income.

My advice would be to call the doctor back and ask for something more than she's already told you. Be direct without being hostile. Let her know that it might be a while until you have the specialist appointment and you'd appreciate more information - not speculation, but reasonable assumptions. And, if needed, medication to treat your symptoms, for example, pain or inflammation. You have what sounds to this layman some pretty serious symptoms, and it's not unreasonable for you to ask for more information. I've found it pretty useful to talk to nurses in the practice I go to (which these days is almost all nurses anyway). They are generally more understanding and compassionate and will find out what's going on the tell it to you in more understandable ways.

Good luck.

[Lady Freedom Returns]

12. Thank you.

She has referred me to a neuralgias who is to call me by the end of the day. Think this is a little out of her league.

[lillypaddle]

3. Do you have any family

or close friends nearby to help you? I don't just mean monetarily.

Hang in there ... so terribly sorry to hear about this.

[Lady Freedom Returns]

9. No 😖

I'm all on my own for this.

[lillypaddle]

14. Ouch

If you're older, maybe Medicare can help, but I assume you're not or you would have checked into that.
Medicaid? Call your state Medicaid helpline, call the Red Cross, keep reaching out to everyone and anyone. Surely your doctor has some suggestions as to social service agencies that can help you out. Meals on Wheels? Every little bit helps. Social Security disability? Call them, can't hurt.

I really feel for you, that's got to be rough.

[Lady Freedom Returns]

17. I'm 41.

And I do have AHCCCS, AZ version of Medicaid.
My biggest issues right now is getting to appointments, eating, and keeping my apartment.

[Cousin Dupree]

4. What type of specialist did she recommend?

[Lady Freedom Returns]

7. A neurologist.

[Cousin Dupree]

15. It's so difficult when you are waiting to see a doctor to get a diagnosis. Things don't move as

quickly as you’d like. Please keep us posted on how things are going. I wish you the very best.

[Lady Freedom Returns]

19. Thank you.

And I will.

[NightWatcher]

5. They're not all death sentences. I've got a few of them and am still plugging along.

I've got various forms of lupus and a wild one called "dermatomyositis", it's a polymyositis- you are going to be learning so many wild new words. I was told I would be dead by now, due to failing kidneys and liver problems in the hospital. That was 7 years ago.

If you get a mixed connective tissue disease, lupus, or any myositis, send me a message and I'll help how I can.

Good luck and don't forget, you have a ton of people here who will try to help.

Peace

[Lady Freedom Returns]

11. Thank you.

I feel like I'm in over my head. My doctor did send a referral to a neuralgias. Their are supposed to call me before the end of the day with an appointment time.

[NightWatcher]

28. I've got intense peripheral neuropathy as well, so we can hang and chat

There's a test they do where they measure the time it takes from a mild zap of electricity (very mild, relax) from your foot and heal to travel to your knee. It's almost comical how bad I tested. But I'm better... AND CANNABIS HELPS IT FEEL BETTER!

Good luck

[Lady Freedom Returns]

6. Sorry I haven't responded to your responses yet.

Been reading about this and it is......not sure how to explain...... Overload.

[emmaverybo]

8. I am very sorry for your having to wait and the stress and anxiety. One suggestion

Is to start working on putting in for at least temporary disability. If needed, permanent disability is retroactive, so sooner you apply. It is true that physical disability can be hard to establish, mainly the documenting part. People are often turned down the first time, but ultimately accepted.
Yes, you might need the help of a lawyer in the long run.
Auto-immune disorders can be difficult to diagnose. You might need to see a few specialists.
It also sounds like you need to see a neurologist.
In cases of auto-immune and some neurological disorders, many people have long remission periods due to treatment.
Try not to self diagnose, as you can unduly scare yourself.
But do look into plans for financial and as needed medical support, in home for instance.
And friends actually like to help. They feel honored. Same can be true with family. When we don’t help, it is usually out of the mistaken belief that the person needs privacy, would ask if she wanted or help, or we can’t think what to do.
Reach out

[Lady Freedom Returns]

10. How do I even start?

I don't know anything about it. I'm in uncharted waters.

[lillypaddle]

16. I'm sure you are overwhelmed

with the entirety of health issues you're facing. This sounds hokey maybe, but give it a day and then make a list of calls (other than docs) you need to make. You can find most of the phone numbers online. Have a legal pad and a pen handy & write down your questions ahead of time. Write down their answers as they speak. Get names. Get numbers. Ask all of them for referrals to other social service agencies.

State Medicaid Helpline
Social Security Administration
Google "social services (your city & state)" You'll be surprised at what pops up.

You may feel alone at this moment, but I guarantee there are people out there to help guide you.

Good luck.

[Lady Freedom Returns]

18. Thanks!

Your right. I need to set back, get myself together. I'm a trained journalist, finding information is what I am trained to do.
And thank you for the leads!

[emmaverybo]

21. With your doctor. If doctor knows nothing, see someone in legal aid. You can also apply

for income assistance if you qualify, in form of SNAP and cash assistance, through your local human services agency, and ask to see a social worker about disability.
Look too at your medical insurance plan to see if you have a benefit to consult with a case manager, family services person...some plans do offer counseling for a variety of issues, including financial.
You can also visit the online Social Security site.
There is a disability benefits help site online. Ask google how do I apply for disability?
Now You also might qualify for unemployment insurance though your last employer.
Honestly, as the site says there’s a 60 percent denial rate, I’d get some authoritative advice before applying.
It is easier to apply for state disability. A few states have short term benefits programs.
Many lawyers will consult for a half hour for smaller fees. You would need to see a disability lawyer.
There are age-dependent free legal services by state.

[CountAllVotes]

27. Excellent advice here!

Follow the instructions that emmaverybo has so kindly provided for you here.

I would suggest the same things to do but this list is even better.

Being LF doesn't know what the problem is, it may premature to file for SSDI, etc.

Once she gets a DX she should file and search for a disability lawyer to take her case if she needs one down the road which is highly likely.

The symptoms sound like MS to me. I could be wrong but it is all too familiar to me, all of it.

Great list and many thanks!

[Lady Freedom Returns]

32. Thank you.

I'll take all advice I can get.

[yardwork]

22. Does your doctor's office have a social worker on staff?

If not, ask the specialist if they have a social worker or other staff member who can help you figure out options. Tell all your doctors that you are facing difficulties with income, housing, etc. Also, be sure to tell them that you don't have any family or friends to help you. Tell them that you are dealing with this on your own and need referrals to social services and other local resources for advice and assistance.

Don't hesitate to tell your doctors about your needs. Helping you address them is part of your care.

[Lady Freedom Returns]

33. Thank you.

As I said up top on another response, I'll take all advice I can get.

[in2herbs]

20. CBD oil is a great treatment for auto-immune disease. The quality of CBD oil bought OTC

without a marijuana card (to get the kind of CBD oil marijuana stores sell) is an unknown but it can be bought without a marijuana card. If you get a MJ card I would choose Charlotte's Web or CBD Wellness brands. You can communicate directly with these companies through their websites or via phone as to doseage. They are helpful and informative, while refraining from giving medical advice. I take 10 drops of 1,000 mg CBD oil 2xday. If you get a MJ card I would suggest also taking 1:1 oil.

[Lady Freedom Returns]

34. A lot of places here in Tucson sell it,...

But boy, the price.
Something tells me this is not going to be cheap to treat.

[in2herbs]

45. R-Alpha Lipoic Acid is good for treatment of neuropathy. As for price, yeah, a 1,000 mg 1 oz bottle

of CBD is about $80.

[yardwork]

23. I'm very sorry to hear this.

[Lady Freedom Returns]

35. It came as a shock.

Now it's up to the doctors to figure out what kind.

[mopinko]

24. egad.

waiting is the worst.
like others have said, there are a lot of them, some not so bad. these days many respond to meds, and you will be able to plug along.
if not, there is always ssdi, shitty as that might be.

fwiw, i think that treatments are getting better all the time, and i think miracles are on the way. have a friend w ms who was supposed to be dead years ago, still alive, kicking, writing, making art and making the world a better place.

hang in there. we are here for you.
vent to your hearts content.

[Lady Freedom Returns]

36. Thank you.

From what I've read so far, only a few types are still classed as life threatening. And I like the odds that it's not.

[femmedem]

25. I'm so sorry. I had a feeling that was what you're dealing with.

Definitely get help from social services to keep you in your home while you get a complete diagnosis and begin treatment, and to get all the financial help that you're entitled to for as long as you need it. Be sure to tell whoever you speak with that you don't have transportation.

I'm glad you have this community. There's a lot of wisdom and experience here.

[Lady Freedom Returns]

37. Thank you.

People are posting all kind great stuff for me to do, how find what I need, even a video down the thread about how diet can help. And my appointment with the neuralgias is June 12.

[Lifelong Protester]

26. I am still here.

And I care. Do you have a friend or family who can help you? It can be overwhelming for sure.

[Lady Freedom Returns]

39. Thank you.

No. I'm solo in this. But I've been through Hades before.....
DU has has been a place for me to find peace of mind.

[blueinredohio]

29. Last year I was having headaches, horrible stomach pains and dizziness

that felt like I was going to fall over sideways. My doctor sent me to a neurologist he did blood work and started giving me B12 shots every two weeks. Now it's monthly. Who would have ever thought about your B12? I have felt a lot better since. Lots of luck Lady.

[Lady Freedom Returns]

40. My doctor did a large blood test....

But she didn't say there was any issue with it.
And thank you.

[blueinredohio]

46. The neurologist will look at the blood tests

and will ask a BUNCH of questions. Some may sound silly but evidently they are done for a purpose. Keep us updated and good luck.

[MLAA]

30. Please research the whole food plant based diets on combatting autoimmune diseases

Please direct message me if you become interested and I will find you the names of a couple good books and send you an amazon gift certificate so you can order them however you like (hard copy, kindle etc)

Best wishes

[Lady Freedom Returns]

41. Thank you.

Watching the video that talks about diet is giving me hope this can be handled easier.

[MLAA]

42. I think it may require you being very strict with your diet, but my understanding is you can control

it with diet. 😉

[MLAA]

31. I posted earlier, but since then I found you a couple of websites if you are interested

I have followed Dr Gregor for over 5 years, and have heard both him and Dr Furman speak several times.


https://m.

https://www.drfuhrman.com/get-started/health-concerns/6/autoimmune-disease

[Lady Freedom Returns]

38. Watched it.

Interesting, very interesting...
Thank you.

[PoindexterOglethorpe]

43. There are a LOT of autoimmune diseases.

If your doctor can't tell you what type I wonder about the competency of the doctor.

Here are just a few of the auto-immune diseases:
Type 1 diabetes
Scleroderma
Lupus
Crohn's disease
Grave's disease
Alopecia Areata
Addison's disease
Myasthenia gravis
Rheumatoid arthritis

And those are not even the tip of the iceberg. But each one has very different symptoms. So what are your symptoms? I don't really expect you to post them here, but jeez. She should at least be able to give you a clue.

Oh, and to think that any auto-immune disease can be cured by diet is bullshit.

[Lady Freedom Returns]

44. Yup.

Been reading what I can. And Harvard Medical says there are 80 of them.

Symptoms: legs shaking as I walk, very unsteady on them, double vision, right hand numb and does not responds like it needs to. Can't type with it or pick up things with it.