Hi!
I had what was believed to be the Miller Fisher Variant of GBS about 4 years ago with a relapse 7 months later following a sinus infection. I eventually recovered and strengthened my body again. Just over a month ago, I began experiencing severe dry eyes with dry mouth at times. I saw my neurologist at this time but since I wasn’t having other symptoms yet, he didn’t know what it was. Afterwards, I started getting severe joint pain and weakness with a little numbness at times in one of my fingertips and my lower legs. I get fatigued easily and can no longer work out. I saw a rheumatologist who drew labs and I had a positive ANA but nothing else significant and the labs drawn for Sjogren’s were negative. A couple of nights ago I got lots of abdominal twitching then the following day I started getting lower abdominal pain with lots of gas and indigestion. After a couple of nights sharp pains on each side of my spine, I began experiencing lower back pain. This back pain has gotten worse and is burning tonight along with abdominal pain and a pinpointed pain in the back of my right upper arm. I am finding it more difficult to walk due to the weakness but very little numbness yet. What does a relapse or chronic issue feel like? I’m trying to get a referral to a more experience Rheumatologist. Does anyone have additional Autoimmune problems since their GBS or CIDP?
I’m sorry but I have no familiarity with what you are experiencing. But I remember how frustrating it was to not know what the real problem is with one’s health. Keep the faith! Keep trying different doctors or encourage the one you have to keep looking deeper.
My good friend Tom, was diagnosed incorrectly with CIDP, but instead he had POEMS and was diagnosed and treated at Mayo Clinic. Tom still swears tha Mayo saved him. Consider giving them a try if possible and you don’t get good answers from your current team of doctors. God bless you! Bill
Thanks for the reply. I tried to get in with the Mayo Clinic 4 years ago when this started first happened to me and unfortunately, they turned me down. It was devastating. I think it was probably due to the inexperienced Primary Care Dr and Neurologist that I had. I have better ones now but still not moving on my care. I have been to 2 hospital ERs the last 2 nights with 2 CTs and 2 MRIs. I had a caring Neurologist on the last ER visit who gave me Prednisone. It helped initially but symptoms coming back. Took the next dose and the symptoms backed off. It feels like it may be a bad case of Sjogren’s but I’m not diagnosed yet. Wonder if I now have another Autoimmune Disorder since the GBS. I don’t know which clinic to try at this point. I have a referral sitting on the desk of a Rheumatologist 3 hours away from me near a teaching hospital. No one understands the urgency of autoimmune disorders. It’s lonely and scary when you are suffering without appropriate or understanding care.
How many neurologists have you seen about these new issues and why don’t you go back to the one you saw now that you have so many different follow on symptoms? Some neurologist can put these puzzle pieces together for you. Seek out the centers of excellence published by the GBS/CIDP international group. It took me 4 different neurologist to diagnose me. Add more to your calendar until someone gets it right. Maybe back to the nice one at the hospital you mentioned as compassionate. May you receive the answers you are looking for. You survived the worst GBS could give you and you will survive this too. God Bless! Bill
Tarhealing, it will be a lot of effort, but might be worth collecting your own medical records and having a file of tests, lab reports, etc with you when you visit each new doctor. That way they have the history of everything you have been thru easily visible. Sometimes if a doctor has to wait on results from other tests you have been thru the doctor loses the urgency of solving your current problem.
I just wanted to give an update. I did see my neurologist from 4 years ago and he tested me for CIDP or a relapse of GBS. I did not have this. He called me an “autoimmune girl.” I continued to get worse and finally showed a high TSH with high thyroid antibodies. I have thyroiditis and possible Hashimoto’s which I believe flared up previously following my bout with GBS after a sinus infection, I just never knew it. Bad thing is that my primary dr. didn’t believe I had a problem. So, I had to switch my primary again. Luckily, labs showed it but again it took a month before I began to get treatment. This happened to me with GBS, as well. I have learned that nutrition is important and lowering inflammatory foods in your diet (ie. gluten, milk, etc.) and avoiding any food or medication sensitivities can make a difference when you have an overactive immune system. My GBS was believed to be triggered by the Tdap vaccine. I still don’t know what triggered this. I hope to continue to learn more about the importance of inflammatory triggers in contributing autoimmune disorders. Thanks for all the advice! I think it’s a great idea to keep a good history and concise notes about previous history just in case you need it down the road!