Need doctor in Georgia/ South Carolina
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May 3, 2009 at 9:28 am
Hi Everyone,
It has been a few years since I posted, but I need some help now for my sister. She was dx with gbs in november, 2005 and continues to recover slowly. Still wheelchair bound, but has hand usage.
The last 4 weeks she has been in severe pain with hands and feet. This occured last summer and the drs tried changing from neurontin to lyrica over several months, but she ended up back on neurontin. But nothing is giving her relief at this time.
Current Meds:
Neurontin 3600 mg normal, has increased to 4200 the last week (but still in pain) We alternate 600 mg and 800 mg every 4 hours. Does anyone else do this?
tramadol 100 mg with 500 mg tylnol every 8 hours
Ultracet every 8 hoursclonazepam 2mg every 12 hours
cymbalta 60 mg am and pm
Daypro 600 mg every 12 hours
Ativan as needed
Zanaflex as needed
Supplements:
Vitamin D, Vitamin b12, multi vitamin,
Thanks for any help!!
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May 3, 2009 at 6:44 pm
In Georgia there is one very good Neurologist by the name of Harry Francis Hughes in Augusta, GA. He specializes in GBS patients and other diseases but is really a good doctor. In South Carolina at MUSC we have another good doctor in Neurology by the name of Mary N. Herring at the MUSC , Rutledge Tower, 135 Rutledge Ave in Charlston, SC. Both of these doctor’s are very good. I saw Mary Herring when she was at Temple University in PA many years ago. Very caring an understanding doctor and is now an assistant professor there in Charlston. I was in the hospital at Temple with my Lupus because and University of PA ER was full and had no beds available. So they sent me to Temple. Mary took care of me until I could get back in with Mark Brown. She later left Temple and moved to Charlston. She’s good! Very good!
so sorry to hear about your sister being in so much pain. I hope my information in some way can help her out. I don’t have GBS but she specializes in GBS patients and CIDP now! Both doctors are good. Good luck with your sister! I will say many prayers for her!
Linda H -
May 3, 2009 at 11:30 pm
Linda,
Thanks so much for the information. We live in Aiken, SC so the Augusta doctor is perfect. She has been seen at mcg for the last 3 1/2 years, but they haven’t been able to help with the pain flares. Thanks again, Kim
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May 4, 2009 at 4:58 am
No problem Kim! I hope that the doctor there can help her. That nerve pain is something else! I don’t have GBS but have the CIDP issues. But have many nights and early mornings with the lack of sleep because of it. And my pain is no way’s as bad as hers. For some reason, they get me on a drug and then months later I get immune to the drug. Then it stops working as well. It’s either that or the weather this time of year aggitating it more. I hope your sister gets well again and ends up back on her feet again! Big prayers heading her way!
Hugs
Linda H -
March 27, 2012 at 10:25 pm
I was diagnosed with cidp, and I’ve had a few ivig treatments.
If there’s any way your sister can get them you should really check
them out, when my cidp developed I couldn’t walk and I coulf barely
feel my hands. Getting steroids and ivig has almost colmpletly cured me.
Just thought I’d share. I’ll pray for you and your sister. She’s so lucky to
have your support. -
May 25, 2016 at 4:51 pm
Hi. We moved to Aiken in November and I am looking for a knowledgable neurologist that can help me continue my Ivig for CIDP. I cannot take prednisone or Solumedrol. I have pain rarely. Is there a neurologist in Aiken that is really good and knowledgable about CIDP? I saw that Carolina Musculoskelatal Institute does infusions, but they misspelled CIDP as CDIP so I am skeptical of the place already.
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May 25, 2016 at 5:50 pm
The GBS/CIDP Foundation has a liaison in South Carolina. Please contact them, they should be able to provide some good referrals:
http://www.gbs-cidp.org/wp-content/uploads/2013/10/GBS-Directory0613.pdf
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