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Auto immune Diseases- Can you help me by sharing your experience?

I was just reading in another thread someone from a group dealing with Auto Immune diseases offered some good tips/advice but when I went to that group site ot potentially join noted that you "must be over 50 to join" so tjhat leaves me out. LOL!
Anyway, since it appears we do have some members on here dealing with these issues I was wondering if you might share some of your experiences? I am 39 and the docs have not yet diagnosed me with a "lifelong" one they have only ruled out several but have now stated that their "working" diagnosis is Reiters Syndrome which is auto immune related. I have been active and healthy for many years now (lost over 100lbs over 11 years ago now and at a healthy weight) and all of a sudden one day something strange happened to my eyes, then my legs started swelling massively, then my arms etc all within a 3 week period. Very strange and very scary. At first the docs were treating symptoms separately and chalking the swelling up to separate injuries due to my workouts but you know your body better than anyone else, right? So, I insisted they run more tests and they did, for Lyme, RA, and many other things. EVERYTHING came back negative with the exception of there being extensive systemic inflammation.
That said they have opted to put me on Methotrexate and for any of you dealing with this you know this is a form of chemo, which scares me a bit. I am now on 6 different medications, see 4 different doctors and was laid up for over a month completely. After some steriod injections and oral steroids I've recently begun to get back into my workout routine (working through the pain, some days better than others) but I would love to hear about experiences from others who've dealt with this, taken this medication and the effects you've had with it, whether or not you can/do continue to exercise, what kinds of "diet" you find most helpful, etc.
I've had the Methotrexate for 3 weeks now and finally relented and started taking it Tuesday, so far not so bad but am nauseous and pretty worn out. Just wanted to get some other opinions.
BTW- sorry for the long post, just wanted to be able to give the background. :0)
Thanks to any and all who can provide some constructive input!

Thu. Oct 30, 2:30pm

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My osteopath told me that you don't typically get one autoimmune disease without family history, it's very unlikely.

In my situation he was right! He found out (after regular docs didn't find it for 5 years!) that I have Hashimoto's disease, no family history. So, we did one more blood test and found out I have a gluten allergy, Celiac's disease.

Turns out treating one actually helps the other.

I don't have much faith in good ole' M.D.s anymore. Maybe you can see an osteopath for advice.


Thursday, October 30, 2008, 2:35 PM

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You hit the nail on the head! I railed about wanting a second opinion from a different type of doctor a NON Rheumatologist (well hello, they specialize in immune disfunction!) and asked to be sent to an infectious disease doc or anyone who would look "outside the box" and unfortunately you need a referral. well my PCP wants me to give this a try but you have to give it 6 mos to a year before they know if it's working which is the frustrating part. That is when he told me this is not a final diagnosis but a "working" one. Through all of this, I too, have lost an awful lot of faith in these docs and have done a lot of fighting with them on my behalf to get nowhere. It is very frustrating because you are at their mercy,,, or start all over again.

Thursday, October 30, 2008, 2:53 PM

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We will start a section on this specific issue, and link to all the relevant conversations and teams. Please post what you find on this thread, and you also probably want to start another team on auto immune disorders. We will help promote this and we will also work to get you guys as much information as we can find.


Thursday, October 30, 2008, 6:30 PM

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I had a really frustrating experience with Western Docs when it came to Autoimmune disorders. They just don't seem to have a lot of answers. Anyway, I was "diagnosed" with Hashimoto's Disease (autoimmune of thyroid), and ended up getting treated by an acupuncturist/naturopathic doctor. Can't tell you how glad I am that I did.

Thursday, October 30, 2008, 8:40 PM

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It's so hard to see a thread like this and not respond; I don't like the idea of a captive audience. So let me just say, that if anyone would like to talk to me about natural products that support Immune modulation, please feel free to contact me.


Thursday, October 30, 2008, 10:58 PM

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