jangle Posted January 5, 2012 Report Share Posted January 5, 2012 I had a nerve conduction test done recently that showed slight abnormalities in my sensory nerves. Following this test (it was scheduled two months in advance for something different) I began experiencing slight symptoms. Now a month later I'm noticing a lot of tingling and prickling sensations in my hands and arms as well as legs. Is this expected during the course of POTS? (To have sensory neuropathy) if not, do you think there's a real chance of this (this being whatever the cause of my neuropathy) attacking my central nervous system as well? Or does peripheral neuropathy usually stay in the peripheral regions? Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted January 5, 2012 Report Share Posted January 5, 2012 I also recently had a sensory test for small fiber neuropathy (not a biopsy). The test had an abnormal result and the neurologist said that the SFN was the reason behind all of my autonomic dysfunction although of course he had no reason for why I had small fiber neuropathy. I wonder also, Jangle, if this could be progressive. I did not ask this question of the doctor but wonder if anyone here knows if SFN is progressive. It seems the pain and tingling have gotten worse and I'm wondering if it could get worse still. Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted January 5, 2012 Report Share Posted January 5, 2012 I have unexplained tingling in my hands and feet. I've been on steroids since they started so I don't know if they would've gotten worse or not. They've been about the same for 8 months on steroids; though they fluctuate day to day Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 5, 2012 Report Share Posted January 5, 2012 I saw a sleep doctor yesterday who brought up a good point. He asked if the tingling began to occur after beiginning the florinef--which it did, because increasing your fluid volume like we do with salt and what not can cause nerve compression possibly resulting in tingling etc. Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted January 5, 2012 Report Share Posted January 5, 2012 I've had tingling, numbness, weakness, and loss of dexterity in my hands and feet as well with all of this. I had an EMV as well that showed my nerves were "slowed" but it was kind of inconclusive as to why. All of this started before I took Florinef or Midodrine, so it's not medication-related in my case (and I'm no longer on Florinef). I think that much of my problem might be due to a lack of circulation to my extremities because all of this is worse when my hands and feet are extremely cold, and the cold also slows down nerve signals (according to the lady who gave me my EMV).What I don't know is whether this is causing any permanent damage to my nerves, or if it just feels that way. I just dread seeing another doctor and having more tests to find out. Quote Link to comment Share on other sites More sharing options...
targs66 Posted January 6, 2012 Report Share Posted January 6, 2012 I've also got these symptoms, and they scare the life out of me! For me, it's always been one-sided -- my left foot and left hand have the numbness and tingling. That's gone on for years, and I now have pain that radiates from that foot up my leg and the same kind of pain in my left arm. The pain can be bad enough to keep me up at night (and I'm pretty pain-tolerant), and it definitely corresponds to how bad I'm feeling on that particular day. Unfortunately, it's become worse and it's pretty much constant now - it always hurts, but just varies in intensity.I have a familial history of MS, but have had a brain MRI done that didn't show any lesions, so that is apparently ruled out. (I realize that there's other tests for MS but am in the UK with a GP who won't do a thing.) My brother, who has MS, also has this one-sided numbness/tingling/pain problem, but from what I understand, the one-sidedness a bit unusual in MS anyways. I can't help but think that our conditions are related!!! Quote Link to comment Share on other sites More sharing options...
TCP Posted January 6, 2012 Report Share Posted January 6, 2012 I have Autonomic Neuropathy from toes to throat, it started in my feet and spread up. Its effect on my heart/liver/bowel/BP and bladder have been the hardest to bare. I get wide-spread burning and deep nerve pain. The worst sensation is the tight corset feeling around my middle. Nerve damage doesn't have to be permanent, as the condition which is causing this problem, if controlled and treated can bring about nerve repair. I've probably had it for years but the past 4 have been the most dramatic. Keeping calm and taking a cocktail of nerve protectors like alpha-lipoic acid and vitamin B's have helped. Acetyl-L Carnitine is very good, too, as well as magnesium and calcium. Peripheral neuropathy is linked to many conditions such as diabetes, but some an be linked to POTS, just like it is to ME/CFS. Meditation helps and knowing your limits is vital. I'm on Gabapentin and Nortriptyline to block nerve pain. Quote Link to comment Share on other sites More sharing options...
TCP Posted January 6, 2012 Report Share Posted January 6, 2012 PS. I also recommend that you keep the circulation going as if you don't that is when numbness occurs. If you do non-weight bearing exercise it helps pump the blood back up into the body and keeps the blood feeding the nerves. Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted January 6, 2012 Report Share Posted January 6, 2012 PS. I also recommend that you keep the circulation going as if you don't that is when numbness occurs. If you do non-weight bearing exercise it helps pump the blood back up into the body and keeps the blood feeding the nerves.Thanks for all the tips, TCP! It's good to know about something that can be done to help this. Quote Link to comment Share on other sites More sharing options...
jangle Posted January 8, 2012 Author Report Share Posted January 8, 2012 Targs66 the sensitivity for brain mris in multiple sclerosis is something like 95% and the other 5% are probably moreso the primary progressive type that typically present with motor symptoms initially. Quote Link to comment Share on other sites More sharing options...
Maiysa Posted January 8, 2012 Report Share Posted January 8, 2012 Yeah, thanks for the tips. TCP!! Am curious Jangle....did you have a QSart test? This can show autonomic nerve damage. This machine helped immensely in my diagnosis. Also, TCP, I have autonomic neuropathy and how do you know if it is affecting your liver? I now have cysts on my liver and high total billirubin count and now I have fatty disease in the liver, although I don't drink any alcohol and never really did but more than a few glasses in the day. It doesn't make sense and I'm almost under my weight category and eat a lot of organic fruits and veges. So a messy liver doesn't add up. Also, Jangle, I agree with TCP, if I do small amounts of yoga and maybe just a few minutes of walking or stationary bike, something to get my circulation going.. the numbness in my extremities gets better. But if I over do it, I can get the same numbness which almost feels like inflammation and then for me I take some children's ibuprofen to take out the inflammation. Quote Link to comment Share on other sites More sharing options...
jangle Posted January 8, 2012 Author Report Share Posted January 8, 2012 No my doctors don't seem to care to investigate why im experiencing the sensory nerve damage because my legs checked out to be relatively normal and in their view all the progressive forms of peripheral neuropathy begin in the feet. Therefore they said it's probably just carpel tunnel. But this past month I've noticed it has gotten worse and my legs are starting to feel it. Quote Link to comment Share on other sites More sharing options...
Maiysa Posted January 9, 2012 Report Share Posted January 9, 2012 Jangle, I'm sorry to hear that. Does your insurance allow you to travel to Mayo or anything like that? Neurologists are the doctors who deal with autonomic neuropathy. Can you make a visit to a good neurologist where you live. Try not to be too discouraged, I know how doctors can be dismissive if they don't understand anything...but I actually saw almost 17 doctors locally before we went to Mayo, so I understand the frustration. IT's such a rare disorder and my local doc told me he would have to go to two more years of medical school to just be able to completely understand my issue and then have to specialize in it to help it. So it's not easy finding a doc that understand these issues. So so sorry that you have to deal with this. Hang in there. Quote Link to comment Share on other sites More sharing options...
targs66 Posted January 9, 2012 Report Share Posted January 9, 2012 Targs66 the sensitivity for brain mris in multiple sclerosis is something like 95% and the other 5% are probably moreso the primary progressive type that typically present with motor symptoms initially. Anyway I don't think you have to worry about MS.hi Jangle - thanks for your answer - I'm a little confused by what you mean when you say the sensitivity for brain mri's in ms is something like 95% - do you mean that the detection is 95% accurate? Can you clarify a bit? thanks!! Quote Link to comment Share on other sites More sharing options...
jangle Posted January 9, 2012 Author Report Share Posted January 9, 2012 Targs66 the sensitivity for brain mris in multiple sclerosis is something like 95% and the other 5% are probably moreso the primary progressive type that typically present with motor symptoms initially. Anyway I don't think you have to worry about MS.hi Jangle - thanks for your answer - I'm a little confused by what you mean when you say the sensitivity for brain mri's in ms is something like 95% - do you mean that the detection is 95% accurate? Can you clarify a bit? thanks!!Sure, 95% sensitivity means 95% of patients with multiple sclerosis will present with the characteristic brain lesions on the MRI. Quote Link to comment Share on other sites More sharing options...
targs66 Posted January 9, 2012 Report Share Posted January 9, 2012 Thanks very much for the clarification - it's reassuring. I worry all the time about having something progressive like MS, especially given how much worse I am now than I was a few years ago.I hope you can get some answers regarding your condition soon - keep us posted. Quote Link to comment Share on other sites More sharing options...
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