The boss is out to lunch so I can ask -> Who has sjogren's syndrome?

[Madrone]

After my eyes went into extreme pain and burning mode again last night I figured that that is almost certainly one of my yet to be diagnosed "issues" - one that goes along nicely with what I suspect I also have - Hashimoto's.

Who has it? What is it like for you? Any stories - happy or horror? Should I just give up now and accept that I'm only 37 and my health is fucked?

:banghead:

[NJmaverick]

1. Madrone, I am really sorry to hear about your problems

You need to find yourself a talented doctor, who is willing to listen to your problems. This might sound sexist, but you might want to look for a female doctor. I have been to many doctors, both male and female. In general I have found the female doctors far more willing to listen to and work with their patients. Most of the male doctors act like they couldn't be bothered and they certainly don't want you to talk to them.

[Madrone]

2. That's not the first time I've heard that.

And I will find one - I'm not worried about that, I just don't know when it will happen. I had to wait a month for the appointment with the dickhead endocrinologist. I'm looking at at least another month's wait to see someone else.

Anyway - the thyroid problem is an endocrinologist problem and the sjogren's is a rheumatologist problem. I think my next plan is to research every blood test that should be run to look for both of those - make an appointment with my GP and go in and tell her I want those specific tests run. After that I will put the thyroid temporarily on the back burner and pursue the rheumatologist. I'm going to research recommended endocrinologists in the state within my driving radius and make an appointment with one too.

Anyway - I have bilateral swelling under my chin that I was told were lymph nodes. It's been there for 3 months. The dickhead endo said they WEREN'T lymph nodes (without even looking at me - cool trick, eh?) - and if true they are likely swollen salivary glands -> consistent w/ sjogren's.

Seriously, if something doesn't start improving soon I'm going to end up unable to work at some point. Not right away, maybe not in a year... but it's coming and I can feel it. Not to mention my normal low tolerance for bullshit has pretty much progressed to NO tolerance for bullshit. You know how hard it is to get along in the world at large with a ZERO bullshit tolerance? LOL

[NJmaverick]

3. From what you are saying all your problems seem to stem from underlying autoimmune issues

so maybe you should look for a doctor that is an autoimmune specialist. Plus this might seem like a silly question, but have you had a thorough physical by your GP so that you have all your baseline info and have ruled out many basic issues?

[Madrone]

5. I agree.

Hashimoto's and Sjogren's are auto-immune disorders. I don't think there is one specialist that covers both though. As far as I know it is a rheumy and an endo - one doctor for each disorder.

I'm not sure what you mean by "thorough physical" but I'd say I haven't had a thorough *anything* medically related.

[NJmaverick]

7. You might try look around

you might find a doctor that specializes in auto-immune. There are not many out there, but who knows you might get lucky.

By thorough physical I am talking a complete work up. Blood tests, EKG, full screenings the works.

[Sanity Claws]

13. I was going to say the same thing

Both conditions are autoimmune diseases. Once you have one autoimmune disease, you are more likely to develop another one.
I'll send you good vibes so you find the best care for you. :hug:

[AllieB]

4. Make sure your doctor does an ANA panel, ANA Titer, and checks for RA factor.

It took me a year to get diagnosed with RA, and I had sjogrens symptoms also. Problem with these tests is they can be positive one day and 3 months later negative. Autoimmune diseases suck.

[Madrone]

6. Thank you very much for the suggestion!

A woman I work w/ has RA and secondary Sjogren's. I suspect I may have primary. Hmmm... you know, I tested "borderline positive" for lupus a year and a half ago and was sent to a rheumy that determined I did not have lupus but definitely had fibromyalgia, which I'd already been diagnosed with.

I wonder if that borderline positive test ties in.

[GOPisEvil]

12. Your last paragraph?

I've been thinking about that a lot. The no work part. We should probably talk about that at some point. :)

[merh]

8. I have found the complete opposite.

I used a female ob/gyn doc until she continued to tell me that I was wrong, I was too young to be going through menopause. After tons of tests (most of which I had to pay for out of pocket) - she just concluded I was wrong. She handed me 10 hormone pills and said, take these for the next 10 days and you will be fine. I did, I wasn't and I never went back to her.

No female should ever tell another female that is going through hot flashes, that they are not going through hot flashes.

x(

[mzteris]

10. I went through "false menopause"

due to a macroadenoma on my pituitary.

If you're having any other symptoms that are strange at all, I'd go have it checked out. Microadenomas are pretty common in people.

[merh]

11. No, I had all the other symptoms

the condition is called Premature menopause and it happens, and can even be properly diagnoses, like the male doctor I when to was able to do. He wasn't surprised and it really isn't that uncommon.

http://www.medicinenet.com/premature_menopause/article.htm

We all don't have the same clock.

And I don't have the same ignorant female gynecologist

[merh]

9. I don't know a thing about no syndrome

I'll just send you good vibes and well wishes :hug:

[morillon]

14. I was diagnosed in 2002 when I was 39.

I have Sjogren's, fibromyalgia, and hypothyroidism/Hashimoto's. Seven years ago when it all started, it seemed like I'd NEVER be right again, but eventually I got back on track.

The doctor who definitively diagnosed Sjogren's was my opthalmologist. The blood tests were always borderline on the various antibodies and factors for Sjogren's, and my rheumatologist finally decided that I had it for sure but my blood values were never going to be textbook. We even tried to do a lip biopsy to see if we could catch a piece of inflamed salivary gland, but the ENT doc didn't grab the right tissue.

For my eyes, I've had VERY good results with Restasis. It can take two to four weeks to see results and four months or more of steady use before the big payoff. I'm in the six month zone now, and my eyes are definitely a lot better, like night and day better.

I use non-prescription, preservative-free tears once or twice a day, as well. I stay away from the big bottles of drops because the preservatives would become an issue.

Another thing that helped a lot was walking, even though some days it's only for 15-30 minutes. I've had several rheumatologists tell me that exercise causes the body to produce chemicals that help with autoimmune diseases, and these are way more effective than any pill they could give me. They also recommended that I get a healthy dose of omega-3 and omega-6.

For a while when I was first diagnosed, I had to take Trazodone to help with the alpha-delta sleep disorder that so many fibro patients have. You wake up in the morning sore and feeling like you haven't slept at all because you aren't getting adequate delta sleep -- you keep popping back into alpha. Trazodone is a crummy antidepressant, but it works great for fibro sleep disorders. I don't take it anymore because I was able to kick the fibro back into remission with a combination of good diet, exercise, stress management, and so forth.

Good luck! It IS possible to get better. In the last few years, I've felt healthier than any time since high school.

[Manifestor_of_Light]

15. Read up on your thyroid disease.

I have had Hashimoto's since I was ten years old and have taken Armour Thyroid for it for decades.


Excellent website with TONS of info:
www.stopthethyroidmadness.com