Need good Neuro in my area
AnonymousJuly 27, 2006 at 1:17 pm
One of my husband’s Neuro’s is Dr. Albert Tahmoush in Philadelphia. I only have his phone number for the Trenton office in Saint Francis Hospital.
the address is
St. Francis Hospital
601 Hamilton Avenue
Trenton, NJ 08629
Dr. Tahmoush does specialize in GBS and CIDP.
Call them for their Philadelphia office number. He’s very good.
Wish that your hubby would be a more caring Caregiver, this is not an easy illness to deal with. When people can’t see the illness they think you’re faking it. Have you asked the Foundation to send you their free booklet, it does explain GBS/CIDP and how the myelin is destroyed and in many cases the axon is destroyed too. This is a very painful and debilitating illness and could take years to get to a certain place where you can function properly. There is no cure just treatments and meds to ease the pain and anymore destruction to your nerves.
I wish you the best.
AnonymousJuly 28, 2006 at 7:36 am
I am from NEPA and I am also looking for a good neurologist. There are two neurologist at Hershey Medical Center that specialize in GBS. Have you been to either one of them? I have not seen either of them as of yet, but have an appointment coming up. I would be interested in comparing notes.
I have been to several “specialist” at various big teaching hospitals and have not found one I like. (if you don’t have the disease they “specialize” in, they have no interest).
I hope you find a good doctor who listens.
AnonymousJuly 28, 2006 at 9:43 am
Im sitting here, trying not to cry (for you and me both). Saying to you that you are not alone, that soo many of us are in the same boat, isnt much help, but it was some small comfort to me when I started becoming involved with the forums. Like you, I cant really find a doc who is interested.
I have read so many things out loud to my husband in the hope that he would ‘get it’. He has seen the meds I have taken lately make a big difference in me, and lately I have not read any posts, or printed anything out for him, but …… today, reading your post, I said out loud “Oh my goodness”, and he wanted to know why I said it, so I read your post and Brandy’s reply. He walked into the room and said…. “oh I know, people dont believe because they cant see, I mean … I do believe you, I’ve always believed you.” Well, blow me over!!! The first acknowledgement in 16 months.
Im sorry, I really didnt mean to make it about me. I think I just wanted you to know that because of your post, I finally know that my husband does believe me. So much for me helping you.
Please keep us posted, and let us know the the neuro search is coming along. 🙂
AnonymousJuly 28, 2006 at 1:50 pm
I just wanted to let you know that many of us would agree that it isn’t easy to find a doctor who will listen. I went through eight neurologist, though two of them were just for consultations. The first three neurologists I had told me I had no hope. Number six was my great doctor and my keeper.
You could try going to [url]www.neuropathy.org[/url] They have a “FIND A DOCTOR LINK”. I don’t think GBSFI has a directory, we usually just post to help each other.
AnonymousJuly 28, 2006 at 6:04 pm
I do believe that the Foundation does have some sort of list of Neuros who they can recommend. If not Gene has a list that he has been keeping for a few years now. I just asked him for a list in the NY/NJ area because my friends son was dxed with Transverse Myelitis a month ago and now the Docs told him they are baffled by his illness and to find another Neuro.
The Foundation has always hinted at the fact that they have a list of Drs.
AnonymousJuly 28, 2006 at 9:18 pm
PA Dr. Weisman with the Neurological Associates of Pittsburgh. He has colleagues that specialize just in GBS. Pitsburgh has a number of doctors that are very knowledgeable with GBS. hospitals – Presbyterian, Mercy or UPMC.
I was quite impressed with Rodney Bell, M.D., head of the neurological intensive care unit (NICU) at Thomas Jefferson University Hospital in Philadelphia, PA,
Dr Tahmoush’s main office is in Philly. his Trenton,NJ phone # 609-599-5792
Thanks for the update, as well as the list of doctors. I have an appt set
for April ( four month wait) to see Dr. Belsh out of Robert Wood Johnson in
New Brunswick, NJ. If he doesn’t seem to be knowledgeable, based on the dept
head’s recommendation, then I know that I have to commute further to the
list of doctors that you recommended. There are 3 good doctors down at U of
Pa. Shawn Bird, Steven Scherer, and Mark Brown.- of these has written
papers on GBS; the U of Pa website says which one.
MD Baltimore – Johns Hopkins. Dr. John Griffin a member of gbsfi med staff. v good doctor. The number is 410-955-2227. Ask for Denise, his wonderful assistant.
good gbs rehab braintree rehab center
take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJuly 28, 2006 at 9:24 pm
Sorry to hear you are having trouble getting a good doctor. I know how you feel – I went through 6 just to get a diagnosis.
I finally was diagnosed by Dr. Kazim Sheik at Johns Hopkins Hospital Neurology Dept. He has written at least 2 articles that were published in the GBS Foundation Int’l newsletter.
I live in N. VA, so Balt. is really too far for me to go for ongoing care. I’m still seeking a neuro here locally to manage my recovery. I have an appointment in a week, and am hoping for the best.
I wish the same for you.
AnonymousJuly 29, 2006 at 7:28 am
VA Dr. Frank specializes is GBS, but you have to understand there are so few cases and so much unknown and limited resources for treatment
Alexandria, we’ve been dealing with George Washington University. The neuro there we use is Samuel Potolicchio. He was and still has been great with Jim. If it wasnt for them, he would not be here with me today. I highly recommend them
take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJuly 29, 2006 at 11:56 pm
First, the Muscular Dystrophy Association can be another great source of medical referrals and resources.
Second, there is much written about the suffering of people with hidden disabilities, with regard to their struggle that I think maps over to some of what goes on here with GBS. It’s less concrete than the broken leg in a cast, the missing arm, the person wearing eyeglasses or in a wheel chair, at least this is the case when we first start loosing our abilities, and after we walk again. People assumed because I could stand again, that everything had healed good as new. I was so glad to just be alive and moving again, I fed into this perception, denying the numbness and coordination problems I continued to have.
Third, it’s also very difficult for people to become accustomed (conditioned according to the Pavlovian theory) to perceiving and interacting with us in a particular way and to suddenly have that change. They have to learn how to be different with us. Sometimes, they are afraid, and putting up a strong front is a coping (defense) mechanism, I think.
Regardless, we understand perfectly where you are coming from and how you feel, and I’m soooo happy for you that you got the acknowledgment you needed to hear from him! Trust your instincts, and we are here for you!
AnonymousAugust 18, 2006 at 10:24 am
Thanks to Gene and Linda and everyone who replied to the need a good doc thread. This seems to be such a big issue with us GBSers.
As I posted on another thread, I’ve actually found a neuro here (she’s with Kaiser Permanente) who “gets it”. What a relief!
I wish the same for all of you who are still searching.
AnonymousSeptember 13, 2006 at 1:52 am
They don’t listen , because they don’t know what to do for you. They are also scared plum to death to give a person strong enough pain medicine to stop the pain. They need a dose of our pain for a few days to wake them up and listen.
Brandy, I just now seen the verse you wrote at the bottom of your post about your husband Frank. That is so sweet of you to say that about him. I respect you for saying that and am sorry for your lose.
AnonymousSeptember 13, 2006 at 9:24 am
Well…broke down & went to local neuro that my PCP recommended who said that this neuro’s father had had GBS. Thought there was hope…..not! Discounted everything I said and even belittled me when I mispronounced one of my illnesses, jerk….Then went on to say that he agreed with other DX that it is carpal tunnel and ulnar tunnel and that I need surgery, showed me the NCS and EMG results to support his DX. When I described progression of weakness and loss of feeling in legs, feet and shoulders, (No NCS there) … Said I was just getting old, probably arthritis. Then said I limped because I have a fracture in my foot, go to podiatrist. Possible since I have been rolling my foot over and twisting it all the time, wonder why???? But the kicker was that he did not believe there was any research that supported that Post GBS residuals exist. Said that he believed that post polio stuff was bunk also. It is just the patients getting old…I’m 45, Up till last fall I was very active, extememly active and although I had residuals I was not shut down by them as I am now…..well going back to PCP for the referral to Johns Hopkins or Hershey and I’m going to talk to a neuro who knows his/her **** about this damn disease.
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