sugartwin Posted June 7, 2012 Report Share Posted June 7, 2012 Has anyone had their small fiber neuropathy progress into large fiber neuropathy? Or developed large fiber neuropathy for any other reason? In the last few months, I started having trouble with numbness and tingling in my feet. I also noticed a lot of other bizarre symptoms, like not being able to tell temperature changes (putting acetone nail polish remover on my toes and not being able to feel the coolness as it evaporated.) I tried to ignore it, but when the tingling started creeping up my legs, I made an appointment with my neurologist. That's when I found out that I couldn't walk in a straight line (ataxia) without stumbling or tripping. I also started having trouble walking up hills or on uneven ground. My MRI was normal, but my EMG showed loss of my ankle reflexes and sensory neuropathy. I have EDS, but I have no idea what might be causing this neuropathy. Presumably, it's the same thing that caused the small fiber neuropathy...? My POTS has also gotten much worse recently, symptoms of gastroparesis (unconfirmed via testing), lower blood pressures and higher resting heart rates (I am always tachy at rest now.) Has anyone had an abnormal EMG with their POTS, or a large fiber neuropathy? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 7, 2012 Report Share Posted June 7, 2012 I have no idea what might be causing this neuropathy. Presumably, it's the same thing that caused the small fiber neuropathy...? My POTS has also gotten much worse recently, symptoms of gastroparesis (unconfirmed via testing), lower blood pressures and higher resting heart rates (I am always tachy at rest now.)Has anyone had an abnormal EMG with their POTS, or a large fiber neuropathy?I'm sorry, that's really disturbing. I don't have large fiber neuropathy, but recently read that small fiber can progress to large fiber neuropathy. I didn't know that and was sort of shocked by this. Since it can be a progression, I would assume the same thing causing the SFN has worsened to include large fiber nerves? What does the neuro say? Has he/she tried to figure out what's causing the neuropathy to begin with? Quote Link to comment Share on other sites More sharing options...
sugartwin Posted June 7, 2012 Author Report Share Posted June 7, 2012 I've mostly been seeing my neuro's nurse practitioner lately since he's so busy, but they seem to be drawing a blank beyond "it's not MS." I asked to have my B12 tested since I'm a vegetarian, but they didn't seem to think it was likely. It is disturbing. I have constant tingling sensations crawling up my legs and I often lose my balance for no reason at all. I think whatever is doing this is definitely what caused the small fiber neuropathy too. I often have on and off numbness which is why I ignored it at first, but this is the first time it's gone on for so long and lead to other symptoms too. I have an appointment with the NP on Wednesday and I hope to get some more info then. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 7, 2012 Report Share Posted June 7, 2012 Some with neuropathies and gangliopathy do well after IVIG but that is all I know. Quote Link to comment Share on other sites More sharing options...
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