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[johnnycoolwhip]

Hello everyone, I just tested positive for Sjogren's. I can never pronounce that right when tring to tell people. Glad I found this forum. I guess I'v had this for years. I have Chronic pain, Chronic fatigue, dry mouth and brain fog. My doctor referred me a specialist, they told me thier not seeing paitents right now. then my doc referred me to someone else they called and this is what they said: "were not seeing anyone right know, you have to go somewhere else." So right now I'm pissed off and dont know how to deal with the pain etc.. I dont like taking IB porhrine, adveal or any of those pills they make me sick and mess with my stomach. So im self medicating with booze. I have to get kidney sugery soon, the doc told me to wait till after the surgery too try to find someone. If anyone knows of some doctor in Kenosha,Wi give me the heads up please. Suppose I can goggle it. Glad to be here...hope to meet some new people that understand this thing..

[Joe S.]

First let me say, Welcome to the forum. There is a lot of good information to be found here.

I have had problems with MTX and Plaq, the traditional treatments for this and so I use alternatives. Some of us have posted what we are taking in our signatures to help others.

When I facilitated a chronic pain support group for six years, A number of the men were self medicating with booze. I think that this may be why we see a high ratio of women to men with AI diseases. Men often self medicate with booze. There are a number of other things that you can do to help yourself. They are not an immediate fix but will help after repeated practice and use.

For the fog I use Acetyl L Carnitine and Alpha lipoic acid. These two also help with other AI disease.

Don't Panic - "Spoon Theory" helps you understand the changes: http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Breathe through the pain.

[Patze]

Hi JCW,

Let me also welcome you to the SJS World and family!  Please look around by using the search engine located in the upper left hand side of this page.  Shucks, you'll often find me there as I learn so much from the wonderful members here. 

I'm sorry that we have to meet this way, but I sure am glad that you've found us!

Take care of yourself -

Patze

[Scottietottie]

Hi Johnny 

Welcome to Sjogren's world. I'm sorry you are having such a hard time finding a specialist. Ideally you need to see a rheumatologist - but also an opthamologist. Some people see immunologists. All of us eventually seem to collect way too many 'ologists'! One 'ologist' can sometimes refer you in and get you to see another one though.

A lot of people swear by teaching hospitals and they get a lot of specialists in one location.

Sjogren's is pronounced "Showgrins". (Well - it's close enough)

I hope you find the site useful and good luck with your search for a specialist.

Take care - Scottie 

[johnnycoolwhip]

Thanks everyone for the warm welcome. I'm take all your advice and use it.

[Pisces24]

I recomment a "teaching/research" hospital also.  I had an immunologist finally diagnose me after a 6 year run around with "so called other specialists".      I learned most specialist are good IF you fit the exact textbook definition of something. If you don't that are totally at see. Oh they will run a few tests to show they are doing something, but eventually they push you off. Even my own GP has a totally different attitude on specialists due to my experiences.

See if you doctor can refer you to a specailist a a teaching hospital.  Maybe there is one associated with a university there?   I go to University of Iowa Hospital and and happy with my doctors there. All my -ologists are there, they consult each other and actually WORK to find out solutions. I always get the "main dr", and two in training when I come in.

As to the stomach, the antibitics I was on helped kill off a bunch of good germs in my tummy. I take a probiotic called FloGen3 (kept in fridge) once daily which has really helped me. "Don't like yogurt!".
Good luck and keep us posted on your progress.  Just remember to be proactic with the doctors!