Me too Tara!

Anonymous
December 24, 2009 at 9:16 am

I would also like to know what you find out. You described my symptoms as if you were in my body.
All I get from the doctors is “we do not know”
I have idiopathic neuropathy, maybe transverse mylenitis but we can’t find it on the MRI’s of the spine. I just had a cervical MRI and another EMG of my right leg and arm and the nurse told me yesterday the doctor sees nothing notable.
I am sustained on medication. Lyrica for nerve pain, Provigil for fatigue, Baclofen for tremors and leg pain, plus synthroid, BP and cholesterol meds.
You take my Lyrica and Provigil away and I would not be able to get out of bed! Without my walker, I would fall down.
I think there is a new/different disease out there that the doctors just need to name! It is kinda Fibromyalgia-like, kinda CIDP-like, kinda MS-like, kinda Parkinson’s-like but has no name.
I am so frustrated with all the disabling pain and suffering and no one knows what it is or even seems to realize how bad it really is…or cares!
Sorry to be such a complainer!
Hope everyone has the best Christmas possible and a New Year with lots of positive changes!
Hugs to all,
Sue