I am a 29-year-old male, and in a few days developed the constant feeling of pins and needles in my hands, feet, lower legs, and I can't seem to taste sweet and my mouth seems numb. I read the posting by "coxygrrl" on 7/20/2005 and I have had a similar occurrence. I was told it was anxiety that was possible the cause after a MRI, and blood work showed nothing unusual. After no change while prescribed Valium, my doc and I are stumped. I am coming up on 4 weeks with no change, how did coxygrrl's situation turn out? I am trying to get in to see a neurologist.
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The symptoms that you describe are non-specific but are concerning for a condition called Guillian Barre Syndrome (GBS). This is a condition that affects the insulation of the peripheral nerves (Myelin) and results first in numbness tingling of the hands/feet and then most commonly an ascending paralysis (weakness of the legs then the arms). There is a Miller-Fisher varient of GBS that can affect cranial nerves and cause the abnormalities of taste and facial sensation that you describe. The disease progresses to different degrees in different people, with some only minorly affected while others require a ventilation machine (from diaphram paralysis). The prognosis for recovery with treatment is good with IVIG and plasmapheresis being 2 of the common treatments. The cause of this condition is not known, but it comes on after the body mounts an immune attack against a bacteria (such as camplybacter jejuni) or a virus and that immune attack instead destroys myelin/peripheral nerves. To diagnose this condition I would suggest an MRI of the lumbar spine with contrast (the cauda equina [nerve roots] will often show patchy enhancement with GBS). The MRI of the brain is normal in GBS. I would also suggest a lumbar puncture to look for increased protien and signs of possible viral infection or inflammation. It is encouraging that your symptoms do not seem to have progressed in the past 4 weeks. An EMG can also be helpful (after 3 weeks) to look for signs of conduction blocks, and loss of H-reflex, etc). While it is true that hyperventilation/anxiety can cause numbness and tingling of the hands/feet, it should not affect your sense of taste.
I hope this has been helpful.
I'm not familiar with the posting you mention, but if you have the tingling, prickly pain equally on both sides and the onset was sudden, you may have had a virus that left you with small-fiber neuropathy. I spent years trying to get a diagnosis for this type of tingling pain in my hands and feet (I didn't even know I had a neurological problem at first, and I don't recall having any terrible virus). So my advice to you is to go to a neurologist at a major research center who specializes in peripheral neuropathy; it is a waste of time to go to a non-expert in neuropathy. Also, a major research center will also be able to run the very specialized tests you need. One of the top peripheral neuropathy experts in the country told me that not much is known about post-viral neuropathies, despite the fact that they are fairly common, but that the "most powerful weapon" against small-fiber neuropathy is alpha lipoic acid, 600 mg. a day, in 2-3 doses. You can buy it at a vitamin store (like GNC). If you google neuropathy and alpha lipoic acid, you will find lots of information. It is the prescribed remedy in Europe, but it is held up in research trials here, probably because the drug companies don't want a simple remedy approved when they have expensive (and mostly not effective) pain remedies available. There are no side effects, and almost no drug interactions. I had the tingling pain for 9 years(!), and after 2 years on the alpha lipoic acid, it is virtually gone.
I have the tingling hands and feet too. My dr. prescribed ALA. I can't take it, it gives me severe heartburn, it is like swallowing burning acid. Even when I take it with food. How do you manage to take 600 mg?
I'm prone to heartburn if I eat the wrong foods, but alpha lipoic acid doesn't bother me at all. The only brand I've tried is the GNC brand, which seems to be kind of coated, so maybe that's it. The University of Maryland medical school has a website on side effects of supplements, and I don't recall seeing heartburn as a side effect of ALA, so perhaps it's something else causing your heartburn?--though I suppose you've looked into that. My 85 year old aunt is also taking the GNC ALA without side effects, and she feels it has really helped her neuropathy, so probably it's worth experimenting with different brands to see if that makes a difference....
So I have now been to a Neurologist I was reffered to, and had an EMG test where they shocked my hands, feet, arms and legs, had an MRI and additional blood tests. So far all they can tell me is that I appear to be in perfect heath (I beg to differ). I suggested that I had been told it could be some strange virus and they said that is what people say when there is no explaination. I have been taking the antioxident ALA 600 aday for a week. My lower legs feel a little less drastic but the sensation of my hands and feet is still present, and still cant taste sweet. The neurologist just said not to worry about it. Any other suggestions???
So sorry you're going through this. An EMG will only tell you if the large-fiber nerves are working okay. An MRI will help indicate MS (which would be nerve damage to the cervical spine or brain). But these viruses that do nerve damage can affect the small-fiber nerves, and that will give you prickly pain, pins and needles, numbness, etc.; to diagnose small-fiber neuropathy you need super specialized tests (so an average neurologist can't run them). So you would need to go somewhere like Cleveland Clinic or Mayo, or maybe a large university research center. If they get a positive test result for small-fiber neuropathy, they run all kinds of blood tests for rare hereditary diseases, but you would probably know if this kind of thing ran in your family, and you would find yourself getting worse rather rapidly. Another possible cause would be "heavy metal" poisoning caused by things like mercury (but you would probably need to work around hazardous substances to be affected neurologically). If you eat much fish, you might want to cut back just as a precaution. The good news is that if you have small-fiber nerve damage caused by a virus, those nerves can in time regenerate. Somehow the alpha lipoic acid helps this process; really, after taking it a few months, I felt fine, and this was after several years of significant pain. So you might just wait a few months and see how you feel....
I just wanted to add to my last post that I had a normal EMG and NCV test one day, and the very next day had a test that showed small-fiber nerve damage. So the EMG does not rule out small-fiber neuropathy. But after going through lots of trouble and expense to get that diagnosis (and to find out there were a lot of terrible diseases I didn't have), really there was nothing top doctors could do for me except tell me to take the alpha-lipoic acid. (There are prescription pain killers like Cymbalta and Neurontin, but the side effects weren't worth it for me, and they won't heal the problem.) The one other thing I found helpful was making sure I got enough sleep. I tried acupuncture as well, but didn't see any effect. Anyway, I also realized after I sent the last post I was kind of confusing on the timeframe for seeing the effects of the alpha lipoic acid. My recollection is that after a couple of months, I was bothered by the pain of the small-fiber neuropathy maybe 20% of the time, rather than all the time, so that was a huge improvement for me; and every month, I felt more and more normal. Now, after two years, I will maybe feel a bit of pain one day every couple of months, mostly if I get too tired. So you may just want to see how thing go for you over a few months. If you continue to feel better, howevery slowly, it may not be worth further tests.
Can you help, I suffer from what the doctors call some kind of disfunction on my right side of face and throat-- feels as if my nose has got something stuck in it abehind th bottom of my right nostril and can sometimes suck it into my mouth although this does not clear it my right ear pops too then I fell as if it then move to my throat and then I feel really sick and dizzy. and vomit. my hands and feet tingle most of the time but when the facial condition flares up I feel nerve popping red hot pokers all over my body and just feel like dying, today my lips are tinglly and so is my tongue. have had Mri's and cat's of sinus and neck and head but nothing seems to show up. Can you assist as I can not plan anything inmy life this just comes and goes and is getting worse
Is Alpha Lipoic Acid useful in treating any type of peripheral neuropathy? I have been diagnosed with vitamin B6 toxicity. My neurologist thinks it will resolve, but will take some time. All the studies I have seen show data with Alpha Lipoic Acid for Diabetic patients. I had an EMG, was normal. So I wonder if my small nerve fibers are affected also.
Thank you for the information. Very helpful. I asked my neurologist about Alpha Lipoic Acid, he didn't even know what it was. He is not a neuropathy specialist. He was hesitant to have me take it, only because he wasn't aware of the studies I was referring to. I am glad to hear that your doctor was comfortable with you using the 600 mg. dose. I think I will try it to see if I get any pain relief.
Diabetics have small-fiber neuropathy; I was told the studies re. alpha lipoic acid are done on diabetics because they are a group that can be easily identified (as opposed to people who had unusual, unidentifiable viruses that caused small-fiber neuropathy). An EMG only indicates problems with large-fiber nerves. I think a B6 deficiency causes small-fiber nerve damage. The small-fiber nerves can regenerate, but it can take years. You can always just try alpha lipoic acid and see if it helps you feel better (and/or speeds up the regeneration process for you). See my comments above for more information. For more information on alpha lipoic acid, you can check www.umm.edu, which is the University of Maryland Medical School's website; look for information on supplements. Or you can just google the term.
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