Does anyone else also have neuropathy?

Discussion in 'Fibromyalgia Main Forum' started by raven36, Jun 8, 2011.

  1. raven36

    raven36 New Member

    I was diagnosed with "idiopathic polyneuropathy" but not given any medication or a reason as to why this is happening to me. Does anyone have some insight on this?
  2. mbofov

    mbofov Active Member

    It would be good to be tested for B12 and folate deficiencies, which can cause neuropathy (and so many of us have problems with B12 and folate!)

    My sister who is a vegetarian was having numbness and tingling on various parts of her body last year. She has really crappy insurance that doesn't kick in until she pays thousands of dollars (which she doesn't have), so I suggested she start taking B12 - vegetarians are notorious for B12 deficiency. Within a few days her symptoms started abating, and she has been doing well ever since.

    So your doctor can do tests to check B12 and folate levels. Also, check out this link for more info re B12 and folate:

    One blood test that I think is useful is the MCV (mean corpuscular volume) which is part of standard blood workup doctors do each year. If the number is high, it can indicate a B12 or folate deficiency. My test results were always in the "normal" range, but were just about at the top of the range, and my energy etc. is improving since I've started doing the protocol indicated in the above Phoenix Rising link.

    Of course there can be other causes of your neuropathy ("idiopathic" just means they don't know what causes it), but so many of us have B12 and folate and methylation problems, I would start looking there.

  3. herbqueen

    herbqueen New Member

    yes- I have many neurological symptoms- optic neuritis with optic nerve damage, numbness all over, muscle weakness, balance, eye pressure, burning etc--

    these neuro symptoms started 8 years after a fibro diagnosis . I test negative for MS. I test positive for lyme according to IGENEX but not CDC standards. My attempt to treat first with herbs and then with a few drugs provoke horrific autoimmune reactions-advancing the neurological symptoms signficantly. Now I'm working with a homeopath- and following MS type diets, exercise, meditation etc.

    I don't have any clear answers. Neurologists say it is not lyme disease- they say there are many, many people that they see similar to me that do not fit into a neuro diagnosis.

    So- I'm not sure if this is part of the autoimmune spectrum ( my mother and sisters all have AI type problems) or if this is lyme disease. i also suffer from chemical sensitivities. If I had not had such horrific long reactions ( last one was 10 month spiral downward)when I take things I'd probably being on antibiotic therapy.

    I'm trying a modified raw foods diet right now- other things to look into are Dr. Wahl's "minding your mitchondria" book and website/facebook page.
  4. pamelakc

    pamelakc New Member

    I have neuropathy and have suffered with it for alot of years.I am on neurontin and B12 for it. Alot of people take Lyrica for it but it just doesn't work for me. I am very surprised that if you are in pain the dr didn't give you anything at all, well I don't know why i'm surprised sometimes dr's are too afraid to give meds to make you feel better. I would fid a dr willing to give you something for your neuropathy. Gentle hugs Pamela
  5. goneee

    goneee New Member

    Yes, I have neuropathy of the feet, arms and hands. I'm on neurotin which helps some, but I do believe that the B12, B6 & Folate Acid combination helped me better when I was on it. Tired Lyrica but that was NOT the drug for me.
    Hope you will find some relief.

    Take care,