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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.
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I didn't qualify in the Schirmers test either - nor on the salivary one. This was a year and half ago when I was still on steroids though.
I've been reliably told by optometrists that this Schirmers is now thought primitive and redundant by eye doctors because many with dry eyes will produce some tears just because of the sheer discomfort. Certainly my rheumy team and my neuro aren't interested in how dry my eyes are now that my ANA has swung positive, immunoglobulins raised, inflammatory markers high and very positive lip biopsy. They tell me that I have a systemic connective tissue disease that they believe is primary Sjogrens.
Sometimes my eyes are very dry and I only score very badly in the tear break up and Rose Bengal tests for eye dryness but they never ask for proof from opticians or send me to eye doctors - they are happy to be led by my account of state of eyes and lip biopsy result alone I think.
I would not let them rely on Schirmers alone to rule Sjogrens out now. I know some with SS have only mildly dry eyes but severe neuropathy that can present like MS. I'm in Scotland and this is the fourth but by far the best Scottish hospital I've attended. Hope this helps.
By the way has anyone told you that you probably have ME or Fibromyalgia yet I wonder? When I have asked about these symptoms on other forums I'm often told that this is what others get diagnosed with when describing the limb weakness? I wonder if this is doctors being lazy and refusing to acknowledge an immune mediated SFN even when it's staring them in the face?!