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01-03-2017, 12:36 PM | #11 | ||
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01-03-2017, 12:50 PM | #12 | ||
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If you get lemons, make lemonade Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases |
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01-05-2017, 06:41 AM | #13 | ||
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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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01-05-2017, 08:00 AM | #14 | ||
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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. |
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01-05-2017, 09:39 AM | #15 | |||
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Hi Mat52, and Healthgirl, and JoannaP79,
You all sound like perfect examples of my Immunologist's saying, "We use the tests we have, not the tests we need." Once we get to the advanced stages of Immune Disorders, each of us may exhibit different problems, and probably problems that have no diagnosis at this time. I was tested for CMT last fall, which is a genetic condition causing neuropathy. I knew I didn't have it, but it was the only genetic condition I hadn't been tested for so the specialist was so hopeful. Doctors want to find a diagnosis that we fit into. If we don't fit, it is very difficult, for all involved. It takes a while to understand that NOT fitting into any existing diagnosis does NOT mean that we don't have serious, painful, disabling conditions. It just means that the diagnosis doesn't exist yet, nor does the test, and sadly probably not the treatment. However, it is possible that treatments for related conditions can be helpful. Certainly anything that alleviates pain and discomfort should be used. I am now experiencing almost constant seizures (mild mostly), and trembling, and shaking hands, which have no diagnosis at present. Earlier I had two EEGs and one overnight sleep study with an EEG, and nothing has shown up on them. The Medication I'm taking for the seizures is Depakote, which hasn't helped at all at my current dosage of 1250 mg/day. To top it off I have the first UTI in over 4 years, so I'm sick. "It's always something". Do keep us posted on this forum. Isn't it wonderful that people with highly unusual conditions/problems/symptoms can meet and share here. Hugs, ElaineD |
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"Thanks for this!" says: | glenntaj (01-06-2017) |
01-05-2017, 11:49 AM | #16 | ||
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To clarify - I do now have a solid diagnosis of Sjogrens based on being ANA positive, having high inflammatory markers, paired oligloclonal bands and also a very positive lip biopsy. I also have longstanding Hashimoto's. But the way my Sjogrens manifests has been primarily neurological with SFN and disequilibrium. The neurologist blames most of my symptoms on Sjogrens but doesn't seem to think that the weakness is part of this. I do because I think I have an immune mediated SFN. Whereas the the dryness is life long so I don't know whether it's Sjogrens or thyroid related but for me it's just part and parcel of life and doesn't cause much hooha for me in the classic Sjogrens way. The weakness does - it scares me and I find the twitches around my body and disequillbrium hard going too. In my case I don't think I have an immune deficiency like yours because my immune system is frantically overactive most of the time, even on immunesuppressants. Also my IgG, IgA and compliments are all raised rather than low. Yes I love this forum too and never cease to marvel at how so many of us get through the day!
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If you get lemons, make lemonade Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases |
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01-05-2017, 12:05 PM | #17 | ||
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If you get lemons, make lemonade Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases |
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"Thanks for this!" says: | bluesfan (01-05-2017) |
01-05-2017, 12:17 PM | #18 | ||
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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?!
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If you get lemons, make lemonade Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases Last edited by MAT52; 01-05-2017 at 01:09 PM. |
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"Thanks for this!" says: | bluesfan (01-05-2017) |
01-05-2017, 02:15 PM | #19 | ||
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01-05-2017, 05:33 PM | #20 | ||
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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. |
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