Originally Posted by MAT52

Hello - I haven't been here for a while as so much has been going on and I'm now a month into another immunesuppressant med for my Sjogrens - Mycophenolate Mofetil/ Cellcept. So far I've had no adverse side effects but not much improvement either. As anyone who knows me too fron the Sjogrens World forums will know - this is only for a trial period of five months. I can't tolerate the Gabapentin family and am told if this doesn't work I'll not be offered anything more unless my organs become involved. My neurologist is very against drugs for me full stop and they all defer to her so it's a miracle I've been able to capitalise on lack of multidisciplinary togetherness in order to get to try a last disease modifying drug.

In addition to the usual SFN everywhere (currently flaring post Christmas/ New Year period) and disequillibrium, I also suffer fro a very high pitched tinnitus and dismotility plus severe GERD and palpitations.

All this I deal with in an ad hoc way and sometimes things do really work. Zantac/ Ranitidine taken regularly in place of PPIs has given me great relief recently for example. Keeping busy, resting, drinking a lot of water and avoiding unhealthy food and all alcohol has helped - as does making myself walk the dogs daily and keeping eyes moist.

But the one thing that I cannot get a handle on is the crushing weakness in my limbs while resting. I end up lying awake feeling like a prisoner in chains. It seems to be the opposite of RLS where I feel unable to move about at all, can barely lift the duvet or move my pillows for weakness/ leaden-limbs. My wrists and ankles plus calves are particularly pathetic and this induces a kind of panic in me because I then feel trapped. Once I break the spell and make myself move it improves - but then the sense of turning to stone starts up again as soon as I'm still and it's worsening all the time. I get very little quality sleep now because of it.

I had nerve conduction studies with EMG recently but nothing showed up at all. In fact my nerve and muscle responses were very healthy indeed I was told. So what on earth is this weakness about can anyone explain? When I do wake there's a feeling of tingle and warm glow all around my upper body and my finger tips seem to give off electric shocks. My doctors are mystified and I'm exhausted by this longstanding and steadily worsening symptom. Anyone else have this or know what it might be?

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.

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 MAT52

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?!

Originally Posted by Healthgirl

I was just told by a the new rheumatolgogist that I saw at Columnia in NYC that the shirmer test is outdated and the dye tests are the only way to see if there is damage caused by sjogrens type of eye dryness.

Originally Posted by MAT52

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?!

Originally Posted by JoannaP79

Thanks Mat. I have nothing else that points to Sjogrens which is why they won't go there. No positive Ana, no official dry eyes or mouth. My eyes are drier as the last schirmers two years ago caused significant watering whereas this time it didn't despite the discomfort. I'm thinking of finding someone privately and begging them to do it. It's hard finding anyone who will agree to it, and all the best consultants say they won't do it. I have so many tests I still need to tick off. You all know how it goes.

Fibromyalgia was the first name given by some random rheumatologist assessing me via work. This was when I first became affected and realised I couldn't keep up with my job. I get so annoyed by the fibro term as it really seems to be code for 'something causing pain or discomfort in your tissues somewhere somehow'. I read the online report stating that a large proportion of fibro patients actually had Sfn. ME has also come up. I have met other ME sufferers as part of a local group. When they describe their symptoms they sound like full blown autoimmune issues.