Originally Posted by JoannaP79

Hi Matt, like Health girl I have exactly the same as you describe. I have had awful tinnitus about the time of onset. I have abnormal heart rhythms and my stomach is getting it badly now. In addition to the heads to toe Sfn I have consistently told my neuro of this debilitating weakness when I'm sat down that is so intense it makes me feel like I'm trapped in my body and won't be able to move. Although walking about is hard work it kind of alleviates this. Lying down helps a bit. This problem has continued to worsen and frightens me immensely. It is intense and does feel like full body paralysis. I feel strong internal tremor like sensations when the weakness is at its worst. As you may have seen from my other posts, I also have noticed significant changes to my legs and hips and bum in the form of atrophy. Atrophy of what I don't know. All my tests are one back k clear, e.g, nerve conduction and MRI. I've seen the best Neuromuscular expert in the country, he heads up the Queens Square neurological centre in London. Even he has said that sometimes no explanation for these symptoms can be found. It's devastating.
The exact cause of my neurological problems are unknown. I have recently posted about CMT as I felt I had symptoms of type 2. But as I have full body autoimmune problems already I am thinking it surely has to be an autoimmune mechanism that is causing damage in the same way cmt can.
I had the schemer test yesterday and my eyes aren't dry enough. My rheumatologist is at least trying.

Originally Posted by JoannaP79

Mat, could you tell me if you are having treatment for the R.A? Is the cellcept supposed to be for all of it or just the sjogrens?
I ask as Cellcept has been mentioned for me but the neuro won't try it based on simply what I am reporting. The suggestion is I start entanercept (biologic) and for the A. S I have in the hope it manages what's attacking nerves. I'm holding off until I've made mind up about muscle biopsy. I'm too scared to have it which is why I keep going on about it in my posts! Your symptoms seem so very similar to mine bar the atrophy.