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medical zebras – autoimmune disorders

As noted in my last post, my wife has an autoimmune disorder, which her new specialist doctor believes is most likely to be Beh

By elyograg

Faced with the choice between changing one's mind and proving that there is no need to do so, almost everyone gets busy with the proof.
-- J.K. Galbraith

3 replies on “medical zebras – autoimmune disorders”

Hi there,

I’ve had Behcet’s for 29 years, and have been writing about it for the last 12. I’ve compiled a list of Behcet’s-related links, including a link to watch the Discovery Health show about my 17-year search for a diagnosis. You can see the links here: http://www.bdshowonline.com
All the best,
Joanne Zeis
jzeis at charter dot net

Thanks for commenting. I have looked around and it looks like you put a comment on any blog that mentions this disease.

Your story and the information you’ve distributed is a large part of why my wife knew with a fair amount of certainty what was going on three years ago. We’ve been playing stupid with the doctors for most of those three years, trying to get something to actually happen.

We’ve learned the hard way that most doctors, already keen on dismissing symptoms they can’t actually see, will completely disregard everything you say if you come in armed with information you’ve found on the Internet.

I’ve had Behcet’s Disease for 21 years. If a person displays some of the most common Behcet’s Symptoms early in their disease (and the doctors rule out other causes), it is possible to get a tentative or “possible” diagnosis relatively quickly.

When I was 28, I only had three specific symptoms several times during one year before a Army gynecologist-in-training saw my ulcerations and remembered that she had read about something similar in her medical books. She looked it up while I was still in the exam room, and said yes, I could have Behcet’s Disease! Her notes in my record quickly got me on the right track of seeing specialists and starting appropriate treatment.

Over the next 20 years, my disease continued to slowly progress, despite different treatments. It’s a tough balance between functioning and medication side effects. It’s not unusual for a drug that used to help to later stop working.

Behcet’s Disease can be overwhelming and somewhat depressing to all involved. I think it’s important to well-informed on the disease, as well as get psych counseling and possibly meds to help deal with chronic illness, pain, and depression/anxiety.

Keep detailed notes and get copies of medical records. It is common for people with Behcet’s to eventually have to apply for disability benefits, and these records will be important, especially since there is no one test to diagnose Behcet’s or determine its level of activity.

The disease can vary a lot over its course, and it may last a lifetime. You’re probably in it for the long haul unless research finds better ways to treat or cure the disease.

Best wishes.

Lisa

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