I have been off the Forum for a bit dealing with acute needs of this body. I was hoping someone else may have had something similar and could share their experience because I am over being a patient.
Feb 15 had TPC w/ IPAA, April 15 had take down. During that time I was plagued with spasms and 'pouchitis' etc. Finally got my new GI to do a pouchoscopy end of August. Found a tight stricture, and inflammation in the pouch. Got dilated, started Canassa -- and life was 180 different. Rare Levsin use, easy emptying it was a miracle. Four weeks later the spasms started again, got in with GI, he did in office dilation and so far, so good. I have also been self dilating (got some finger cots) when I feel like I need it.
During that time, in Mid september I really noticed my right leg didn't feel right. The sensation on both sides on each side were not equal and the top of my right foot felt like prickly fire. Over the course of a week, it felt like my foot was in cold water and the sensation of weakness and fatigue of the leg started creeping. My foot falls off the gas pedal occasionally. I ended up seeing a neuroophtho guy for a brief vision change that happened in april and july. He found axon loss in my right eye (I didn't know it was there). Runs a battery of tests, and it seems I now have Sjogren's. Honestly, I thought the 'dry everything' was from the TPC, guess not. Fast forward to clean brain MRI. Then last week I woke up with the same fatigue sensation in my right arm. It is kinda sloppy, dropping things occasionally. Difficult to hold pens etc. The thing is all the symptoms wax and wane but never really completely disappear.
I went to the ED with the Arm stuff because I had been patiently waiting for testing, but it concerned me. Got admitted -- c and t spine MRI clean. LP cell counts normal, waiting for the send off labs to return. The neurologist that saw me as an impatient is very nonplussed. OT and PT found issues and recommended Neuro rehab...but the doc (and I am not generally a doc basher) just seems so relaxed about the whole thing. WHY do I need neuro rehab if nothing is wrong? WHAT is the cause? I am just angry because I feel like stuff is happening and I am being dismissed. I feel like the GI doctor did the same thing, nonplussed about my symptoms, THEN AFTER the pouchoscopy when there was something obvious he developed some empathy and urgency. I don't get it. I feel like medicine is turning into less about a physical exam and more about labs and imaging to determine things...and forgetting about a good PE.
Anyone else on here with either MS or an MS mimicker -- meaning developed a de novo autoimmune disease that started doing weird things. All my macro nutrients are normal. I currently, have a spinal headache from the tap Tuesday. I went to the ED Friday, and after 3 L of fluids really did feel some better and went home without a blood patch. But now, since I am still having headache I wonder if that was the best decision to not push for one...but honestly after an hour and half LP requiring me to valsalva my csf fluid out, I really didn't want another procedure.
Thoughts?