Finally diagnosed!Support!Previously "fibromyalgia, Guillain Barre, MS, disc, etc."

[Cait1994]

Hi -

I participated in Brain Talk years ago as I have epilepsy. Not why I am posting today!
History - 5 years ago onset of weakness, diplopia, double vision, trouble walking - went away. A doc. told me it was Gullain Barre but not sure. Or MS (which my brother truly has with lots of white matter). Another Doc. diagnosed me with fibromyalgia 4 years ago - but none of these made sense.

For me, increasing terrible pain in both legs - night is worse. Cramping, aching, increasing weakness walking and especially up and down stairs. Feel "wobbly"; unbalanced.

Went to neuro. today - she thinks I have "motor neuropathy" and I'm to have an MRI and EMG.

I would really, really, really like to know why I am getting weaker, and having this terrible pain. I am 49 years old and think of myself as strong. I have had some challenges including breast cancer, accident where I broke my back and developed pneumonia - but am overall ok! When I broke my back I did have terrible neuropathy in my feet but it subsided, and this was AFTER I had the weakness event 5 years ago.

Finally, I have "hyperreflexia" - very severely.

If you read this far, many thanks!!!!! Looking forward to any feedback or questions that I might ask my doctor.

Cait

[mrsD]

Oh, my. Sounds complex and confusing. You've been thru alot!

I would first look at your medications you are taking for the epilepsy. (many can lower calcium and Vit D, and Depakote can cause carnitine deficiency.) Did you have Chemo for the cancer?
(this can cause neuropathies). Did you have Levaquin or Cipro for the pneumonia? Or Flagyl? These antibiotics have caused PN in some people.

So could you post what you take currently? And also include what you may have recently changed. Do you take Statins or acid lowering drugs for the stomach?

Have you had serum levels for B12 and Vit D done? What were the numbers the doctor reported to you if so?

[cyclelops]

I am with MRSD on the Vit. D, calcium thing. Everything was blamed on my accident, on my Lyme Disease, on being athletic, on fibro on everything.....until my kidney labs started to dump....and vit. d is low, as well as Ca being low, and K being low.

So....now they tell me all this is due to Sjogren's, which I brought up before and got laughed at, so, now I am not buying it.

Anyway, getting up stairs is my issue....I am feeling better after about a week of treatment, but fixing this could take a long time, if ever.