Still need md in upstate ny
AnonymousMarch 13, 2007 at 3:27 pm
Hi, my name is Judy. I am new to the site. I have been reading for some time and posted once about a month ago looking for a good neurolgist in upstate newyork. Barbara Katzman from the foundation replied with a name however he is a pediatric neuro. Does anyone have a name of a good neurologist at Strong Memorial in Rocherter New York? I have been having alot of problems lately and am concerned I my have CIDP,my MD’s just keep giving me more drugs that make me even less alert and wouldn’t give me another treatment of IVIG. Can anyone help?
AnonymousMarch 13, 2007 at 4:37 pm
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.
AnonymousMarch 13, 2007 at 6:28 pm
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.
AnonymousMarch 14, 2007 at 12:04 pm
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.
AnonymousMarch 14, 2007 at 1:29 pm
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.
AnonymousMarch 14, 2007 at 7:36 pm
Thank you for your replies. This website is a god-send. I saw my primary md today, he is willing to get a second option. First we will try to find a doctor closer at Stong Memorial in Rochester,Ny. If no luck there will look to go to Boston or New York City. I have been given the names of two dr’s. Dr Allen Ropper in Bosten, and Dr Normen Latov in NYC. Hope to be able to stay a little closer to home though. Unfortunately my Md would not agree to a round of IVIG until he did more research on CIDP or chronic GBS. He did agree to adjust my meds so I don’t feel like a zoobie! Right now I am on Neurotin 600mg tid, and topamax 50mgbid.I tried Lyrica, Cymbalta, and Elavil all with side effects. Again thank you for your replies.
AnonymousMarch 16, 2007 at 11:03 am
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.
GBS/CIDP Foundation International
AnonymousMarch 27, 2007 at 10:31 am
Hi, Unfortunately I was back in the hospital last week. Now my MD’s are saying CIDP. Fortunately, I have an appointmaent this friday 3/30/07 with a Dr Michael Dunn out of Strong Memorial in Roechester,Ny. Has anyone heard of him. I am just keeping my fingers crossed he can help me feel better. I had to be admitted due to severe weekness/numbness in my arms and legs. I was only treated with solumedrol in hospital ( no IVIG) and came home on prednisone. Also have severe nausea and vomitting that is just know getting better. Nausea seems to come with every relapse also.
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