I just found out I am systemic after only 2 1/2 years. I am only 38 also. Well, I will be 39 next month. I have it in my bladder and stomach/gi area. I also have it in all four extremities and eyes. Definitely not fun. I'm so sorry. I hope you can get relief!!

TK

TK, I am battling mutiple autoimmune diseases as well as RSD. I have severe chronic unexplained diarrhea.

Do you mind telling me what your symptoms are for rsd in your GI area?
thanks
kathie

My GI symptoms are nausea and flip flop between constipation and diarrhea. I also have lost a lot of weight. I weigh between 110-112 and I'm 5'7. I weighed 160 when this started. I also have really bad stomach pains and have to really eat blandly now. No hot stuff, spicy, greasy, or anything.

Familiar?

TK

TK, thanks, yes the symptoms are familiar. I have about 30 bouts of diarrhea a week, lots of intestinal pains and lost 50 pounds in 6 months. I have to watch everything I eat.

I also have constant tinnitis and balance issues/dizziness which I think is part of the systemic RSD too.

Sorry you are going through this too
kathie

Yes, cait 24, our symptoms are quite similar. They tested me for ms and had actually dxed me with it and then when I went to UT southwestern, I had no ankle reflexes, and ms usually causes hyper reflexivity. I also have cardiac issues, and the balance problems so bad I use either a walker or wheelchair. I hope you find something to help!! I haven't yet.

TK

Sorry girls, I bet this is the dumbest question ever....

Have you been tested for coeliac disease? It's quite common to have it when you have CRPS, it's another auto-immune disease...

The diarrhoea, weight loss, stomach cramps etc all sound very familiar. I felt so poorly before diagnosis, it affected everything, and i felt a lot better on a guten-free diet - once my doc had finally agreed to send me to a gastroenterologist (took nearly two years to persuade him, omg). If you really don't want to do tests, you can just try going gluten free and see if it helps, but you do need to be very strict, I'm sensitive and even the tiniest amount makes me ill.

Just a thought. Sorry if you already have it or have been tested!

Bram.

I have been tested multiple times for celiac, both by villa biopsy and blood test. All were negative. I have cut most of my carbs out because with the MG they are too hard to chew and swallow. I eat mostly fish, overcooked veggies & potatoes, yogurt and soft fruit.

I was leaning more towards Chrons but the GI doc thinks it is one of my other autoimmune disease. There is so much overlap it is hard to tell.

My original neuro thought I had MS and not MG but my MRI of the brain did not show anything. So he diagnosed me with optic neuritis and expected to see me back. 50% of MS patients are first diagnosed as optic neuritis. The neuromuscular specialist did a SFEMG and said MG. In the last 3 month, my RSD has been breaking through after 15 years under control - those funny nerve sensations and the awful cramping and spazing of the feet. I think the MG aggrevated it.

thanks,
kathie