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Old 11-17-2006, 12:20 PM #1
jnewk jnewk is offline
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Default yet another autoimmune disease

well, I have an additional disease.....after nearly 35 years of these symptoms, I finally put it together, thanks to reading up on MS, hashimoto's thyroid, and the (until now) undefined autoimmune disease that has caused me so much pain and grief all these years.

I have Behcet's disease. yep. there are five criteria. I have them all. No one put it together, but when I met me dr today because my eyes are infected and very painful, I told him my theory, and he gave me an A+ in research and diagnosis.

Of course, it doesn't mean much in reality, they treat it with steroids, etc. like the rest of these disorders, but I feel better knowing that it all means one thing.

In case there is interest, the criteria are:

mouth sores (similar to canker sores, but much much worse)
genital sores (look like herpes, but its not)
skin sores/lesions.....
uveitis (an eye thing...not good, could go blind)
vascular issues (I have what they said is aortic stenosis, but, its actually one of these "lesions", similar to the skin and genital sores)
and various gastro/colon problems.

So, I just thought I'd share. Really, its the learning about my MS and learning to be a better self-advocate that helped me explain it to the dr.

I'm off to the opthamologist now. My left eye is very swollen and very painful. The right is not as bad -- and I don't want it to get worse.

Happy Thanksgiving!
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Old 11-17-2006, 04:40 PM #2
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Wow, you're certainly taking it well. I think I'd be a basket case by now. I know that it a relief to put a name on it, but it sure sucks gravel. I'm so sorry that you are inflicted with all this extra pain and worry.

Let us know how it goes with Optho and I hope he can give you something for relief.

My Thanksgiving is going to be a quiet one, which is just great with me. I'll have more time to give thanks for all my blessings.

Happy Thanksgiving to You and Yours.

Hugs,
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Old 11-17-2006, 07:26 PM #3
jnewk jnewk is offline
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Default a validating dr

my rheumatologist/primary dr is a very supportive and validating guy....unlike a lot of drs, he appreciates an informed patient and so I think that's partly why I am taking it so well....he didn't dismiss me, and additionally, he applauded my self-advocating, so that helped. And, of course, I love to be "right"

I wish my neurologist was more like this guy.....but, ce la vie.

Sally, I love that expression you use "sucks like gravel" --- I may use it!

anyway, the appt with the optho went well, he gave me the drops which are a combo antibiotic/steroid and also another tube of goop that is antibiotic, so my eyes should be cleared up in a couple of days.

thanks for your response!

janet
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Old 11-18-2006, 10:22 AM #4
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HI jnewk:

Kudos on your research although I'm sorry you have to self-diagnosis such a nasty problem.

Glad you rheumy is so supportive, wish there were more like him.

Happy Thanksgiving.
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