Still need md in upstate ny

Hi Judy,

Welcome to the forums.

You could call and ask the hospital to refer a few Neuros to you. Then call them and ask if they deal with GBS/CIDP. I’m also sure your Primary Care Dr can recommend a Neuro for you. Did you ask why he wouldn’t order more IVIG for you?

Call the Foundation again and explain that the Dr they gave you is a PED’S Neuro, maybe they have someone else on the list from your area.

Hi Judy,

Unfortunately many of us are in the same boat regarding neurologists, I have been trying to find someone for well over 2 years who will admit that GBS has residuals 🙁 . Many have not seen GBS/CIDP, and many have very limited knowledge, possibly from text books or internet. In a way, this is understandable as there are soooooo many illnesses out ther. The Foundation, I believe this is the case, has names of doctors who have treated patients in the past, and patients then send these names to the Foundation so that they can in turn give it out as more of a ‘suggestion’ – hope that makes sense.
The reason why your doctors may be hesitant to give you IVIg is that it doesnt help unless you have (and as you said, you may have) CIDP, or you have relapsing GBS. This sounds like a vicious circle, because if you were diagnosed with CIDP they would probably give you IVIg, but obviously that is why you are looking for a neuro who knows about this so that you can get a diagnosis …… and on, and on, and on. I’m so sorry you are going through this, it really is disheartening 🙁 and is extremely stressful. Please keep us updated on what happens.

[QUOTE=snoellea]Donna
thank you for your reply. I asked both my primary care and my neurologist for IVIG. They are both hesitant to give it to me. My neuro’s rely was due to possible kidney damage, but my kidney function is normal and I am only 39 years old I don’t know. Just know I am in alot of pain, I keep losing my balance and I am weak. I go see my primary tomorrow maybe he will listen.[/QUOTE]

IVIG with a sucrose (sugar) base is not for anyone with Diabetes.They do make IVIG without a sucrose base. The thousands of people who have received IVIG haven’t had any problems with their kidneys.

For the pain, ask your Drs for Neurontin or Cymbalta or Elavil, they work to block neuropathy pain.

I wish I knew a Dr in your area. If you are willing to travel to Manhatten, then there are a few we can suggest for you to go to.

Take care

Hello:

I don’t remember the name of the neurologist I gave you from Rochester. The ones we have on our referral list that identified themselves to us as seeing patients with GBS and CIDP are Drs. Barbano, Ciafaloni, Logigian, Stanton, Thornton, Tawil, Poduri and Herrmann. We have many others in other parts of the state. Dr. Ropper in Boston is actually on our Medical Advisory Board.

I hope this helps.

Barbara Katzman
GBS/CIDP Foundation International

Hello, I was admitted to Highland Hospital for GBS a couple months ago. I now see a neurologist at Strong. His name is Dr. Tourydell. I wish you well, if you need any other names let me know!! I’ve spent some time at Strong since being struck by this illness.