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Old 09-13-2016, 02:14 AM
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
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MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
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Quote:
Originally Posted by en bloc View Post
Small vessel ischemic disease in the brain does NOT typically cause vertigo as you describe. Actually, most people don't have any symptoms unless it is wide spread or significant in size/amount of the ischemia (which yours did not indicate). The only other symptoms typically reported with SVID is cognitive type problems with thinking, memory, etc...which you haven't said you experience. Again, this would only be normally seen with significant SVID, not mild.

So hopefully this will ease your mind about the significance of this finding. I can say that the SVID may be from the Sjogren's...I have pretty significant SVID as a result of my Sjogren's...but I also have APS and have had 3 strokes and numerous TIA's.

It will be very interesting to see if there is any changes in your MRI from 18 months ago and now...that is what will tell whether your changes (vertigo) are consistent with any disease process that has progressed. If I remember correctly, you didn't have the vertigo back when the first MRI was done.

You really need another biopsy. I thought you had positive findings for SFN on the first. If it was negative, then by all means it should be repeated. And most importantly, is to have the morphology done on the next skin biopsy. One significant finding with Sjogren's related SFN is that the fiber density can be normal but the morphology (condition of the fibers) show damage. My density was normal on the first biopsy, but the damage was very clear with segmented, torturous, and swollen fibers in many areas. This is what Sjogren's can do to the fibers...not necessarily only reducing density. And this finding is just, if not more, important. You also need to have more than one location done on each leg. There is NO way to determine length or non-length dependent SFN if only one site is biopsied on the each leg.

Hope this helps. Please keep us posted.
Thanks Enbloc - this is all in line with what I suspected so am grateful with you for both confirming and reassuring me. I absolutely hate the thought of vascular dementia because both my parents had this in the run up to their untimely deaths from cardiac arrest. But you are right to say that I have no signs of cognitive impairment yet. Just this wretched vertigo/ disequilbrium. I actually did have it last year too around the period of time the MRI was done but it was more intermittent and I didn't have it that actual week or month. However I had it a few months before when I went to see the neurologist for the first time so it was on the menu so to speak!

I'm not at all confident that my skin biopsies were taken correctly since my GP offered to do them when I was ill with pneumonia. He was a little pushy as had never done this before and wanted the experience. He followed the neuro pathologist's instructions and took one punch biopsy from the outer side of each calf. Which makes me think that neither knew what to do properly! I may have to push to be sent to London for it although the big hospital I'm with now should be much better placed to know what to do.

I know you are spot on because there is an article about it in an edition I have of the Brittish Sjogren's Syndrome Association magazine from earlier this year - in an edition dedicated to SFN and ganglionopathy of Sjogrens - showing photos of where the biopsy should be taken from. There seems to only be one from each leg though but these are far closer to the ankle than mine were. I'm also not that confident that the samples were stored and dispatched at the right temperature seeing as they were taken while on my island home and send to two different hospitals.

So my rheumatologist refers to my SFN as presumed rather than clinically diagnosed. This is why I'm not that confident that I will qualify for any further immunesuppression such as Cellcept if there is no organ involvement showing up from my CT/ MRI. I will try to discuss this with my neurologist next month.

I know you are very much further down the line than me with symptoms and signs, but out of interest had your SFN turned from being severely painful to tingly and somewhat numb by the time your second biopsies were taken? I'm just not that confident that my symptoms show a worsening, although I do believe that pain is an indication that the tiny nerves haven't yet died? So my lack of pain in legs and feet now may signify worsening rather than improvement? The burning pins and needles pain is worse in my hands and arms than in my other extremities, but really not too bad at all compared to this time last year.
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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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