Just diagnosed with CIDP

[Josii]

Hi. I was just diagnosed with CIDP and low parathyroid hormone in June of 08. My symptoms: burning, stabbing, tingling, numbness in arms hands face neck legs and feet began Decemeber 0f 06. I also lost a good part of my sight in april of 07 and now have cochlear nerve damage. I also have tonic-clonic seizures and daily migraines. IIs there a link between CIDP and migranes and seizures.
Also been on a month of 60mg prednisone and have seen no improvemen. Had two 5 day IVIG treatments in August and October. This greatly improved my eyesight and muscle weakness, but does not help the pain.
What other treatment options are out there?
Also been on LYrica, Cymbalta, Neurontin, Elavil and none of these helped.
Also had a positive tensilon test and EMg for Myasthenia gravis, but not a confirmed diagnosis. Mestinon helps.
Thanks for the time
K

[VincentVols]

I was diagnosed today with what my neuro doctor seems to believe is either CIDP or a varient of Gillian-Barre Syndrome.  
My diagnosis was based off a spinal tap procedure that was done a little over 2 weeks ago.
I tested positive for the antibody GQ1b.  I can't explain what it is, but google offers some nice websites.  
I too have the burning, stabbing, tingling, and numbness in my arms & legs (espicially hands & feet).  Mild headaches, but not certain they are all "migraines".  Total body weakness and fatigue are my two most obvious symptoms.

However, I have also been diagnosed with Gastroparesis.  It basically means slow motility of the nerves in your stomach.  I digest slowly, making my appetite minimal at best. If I am lucky enough to actually hold down a meal, I suffer from diahrea.  My doctor is looking for a way to connect the two.
Do you have any stomach issues with your CIDP?

At this point I am scheduled for IVIG treatment next week.  I have been dealing with this since Jan. 2008 - and just diagnosed or partially diagnosed today.  It's nice to know something, but at the same time all this still feels like an unknown.  (despite countless hours of research online).  I just want to know that I could feel better soon.

Let me know how you are doing.
Brandy

[Padro46]

If you dont mind me asking how did they arrive at the CIDP dx, My nuero said we need to rule this out with me??