Can't walk from terrible pain please HELP! I Feel like the TIN MAN!

[Gracygirl]

Doctor please answer.I have terrible neuromuscular trouble due to what I have been told is a post viral syndrome and a low B12 level (211)when checked. All tests including MRI's of head, neck, upper and lower spine complete, w/without contrast, spinal tap, CT scan, GI series, blood tests checking for Myasthina Gravis to MS to periodic paralysis,lyme ect., all which came back negative. My EMG studies were the only thing that came back with results of perhipral neuropathy. The dx of post viral was on exclusion and I am concerned something was missed. I started to walk again 3 months ago. I am at the year mark since feeling sick and I still feel twitching in my legs and thighs with terrible pain and I am very stiff, which keeps me from walking a lot. When I first began walking again the symptoms subsided a little each day, but now they are hurting again. Is this waxing and waning normal. Can I go for long periods of time with little pain and then it returns? Is this normal for post viral neuropathy? I live in western NY and the weather is damp could this contribute to my symptoms? Should I be concerned that something systemic is causing the neuropathies and was missed? Cant take meds as I am hypersensitive and have IBS. Please help I was an avid figureskater and roller blader (10 miles daily) before this happened, I want to skate again!

[Forum-M.D.-SH]

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.
    Please see my previous post.  As stated before, I would use this set back as an oppertunity to be re-evaluated in hopes that something that was not found before could be found now.  It is common to have relapses in post-viral syndromes.  Especially if you have a cold or other illness, it is common for all of your old symptoms to return, but they generally improve when the underlying problem resolves.  Many people with post viral neuropathies never recover and I am encouraged to hear of your progress.  Some suggestions to follow up on (I do not know the specifics of what blood work you have had) is stiff person syndrome (patients have anti-GAD antibodies) and Issac's syndrome (a K+ channel disorder), which may cause the symptoms that you describe.
I hope this has been helpful.

[SDE7]

Have you had your magnesium levels checked?

[Gracygirl]

I believe so. I was admitted to 5 hospitals in the last year and had tons of bloodwork, so I think they would have done a magnesium check. Do you know a lot about magnesium levels?

[SDE7]

Magnesium is necessary for normal functioning of your nerves and muscles.  If you are deficient, some of the symptoms include muscle soreness, muscle twitching, cramps, spasms, and fatigue.
Some of the conditions which contribute to causing a deficiency include malabsorption in the intestines, low dietary intake, use of diuretics, high intake of calcium-containing foods, stress, and consistent strenuous exercise.  
If you have had a serum magnesium test done, your body can be deficient even if that test comes back normal.  Most of the magnesium in your body is stored in your bones and muscles, and your body works hard to keep your blood levels constant by pulling magnesium from your tissues.  I would highly recommend asking your doctor about magnesium and other tests that your medical facility can do to check it.  You could also research the subject on the internet, just be careful to find credible resources for information.

[Kit07]

Have you been checked for heptatitis c?  There is an often-associated condition called cryoglobulinemia.  Cryoglobulins are our ownimmune complexes bound to viral units that together become large molecules that wedge into our tiny cappilaries and cause small-vessel vasculitis and peripheral neuropathy.  The condition is agravated by cold.  It can be detected with a blood test. You can find info about cryglobulins, and other HCV extrahapetic complications at    

Good Luck
Kit07

[Gracygirl]

Hi Kit,

Thanks for the information as I have already considered it may be something like that.  Somehow I thought I recieved a vaccination against Hep C nd B in the past.  I was working for a doctor about 14 years ago and was vaccinated for a few things.  Not positive though, I would have to look into it more.