Part 5 (the last)
Fred Martin
Member
Registered: Jun 2005
Location: Outside Atlanta, GA
Posts: 85
Kim,
My neuro is Dr William Stuart. He is the medical director of the MS Center in Atlanta and their clinic is located just off I-75 and Northside drive which is about 8 miles north of Atlanta. While the majority of the patients in this practice have been diagnosed with MS, the practice does have a number of CIDP patients. The facility has in house MRI, internal medicine MD’s and PT.
I have been with Dr Stuart for over 10 years now (he is my third neuro) and he always stays on top of the various studies, treatment protacols and published reports on CIDP. He is light years ahead of the other two neuro’s that treated me previously. Much of the treatment he has initiated for me was “ahead of the curve” so to speak and kept me active and working for nearly 10 years longer than was anticipated.
There is currently a clinical study in about five countries being conducted by Biogen, Inc. to test the benefit of the MS drug Avonex in the treatment of CIDP. Dr Stuart and I discussed this treatment over a year ago and I began using Avonex in April of this year in place of plasma pheresis and IV solumedrol every other week. So far the Avonex and Cellcept medications have keept my physical status in check.
Remember that CIDP patients respond differently to different treatment protocals. What works for one patient may not always work for another. Goodness knows I tried a bunch of different treatments until I hit on the pharesis and solumedrol infusions which did wonders for my condition.
Ask members on this site as many questions as you can think of, make a list and carry it with you to to new doctors and ask them one at a time and get specific answers to all of your questions. Because this disease is rare, it is amazing how little some of the medical specialists really know about it and what treatments are being used to fight it.
Best of luck to you and your son and here’s hoping your can get some answers and above all some help for his recovery. Stay positive and believe.
Fred
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Jody
Junior Member
Registered: Jan 2006
Location: outside Syracuse N.Y
Posts: 1
Many Thanks !!!
Not a new CIDPer but new to this site. What a Godsend all of you are. I have spent hours reading all of these posts and have gotten some amazing tips that have helped so much!! In the 7 1/2 years I have been battling “the beast” I have never met anyone else who could relate to the feelings, frustrations, treatments…. I just wanted everyone to know what a help you all are and how grateful I am. I look forward to more. Quick hx: started June ’98, relapsing/remitting untill sept ’05 now pretty much progressive, through IV solumedrol, prednisone now having IVIG every 4 weeks. Just finished 3rd round. Again, Bless You All !!! -Jody
Jerimy
Senior Member
Registered: Dec 2003
Location: Ann Arbor, Mi.
Posts: 2000
Welcome to the family Jody, I hope you find the information and support here that you need. Take care and glad you found us.
Jerimy
RUTH
Junior Member
Registered: Jan 2006
Location: FALKLAND ISLANDS
Posts: 3
Just been diagnosed, really want to talk to someone with CIDP
Hey! there my name is Ruth, I live in the Falklands with my husband Paul and our three boys. I started to suffer with CIDP in about August last year. We live in a small community of only three thousand people, after several attempts to diagnose me I was sent to see a specialist in Santiago Chilie, as our hospital is small and we have no specialists. I have been diagnosed with CIDP, I was commenced on IV IMMUNIGLOBIULIN, (Sorry think that’s spelt wrong!) it was fantastic and worked within a couple of days, I then developed Meningitus C. symptoms and was taken off it. I have now returned home to the Falklands commenced on oral Prednisolone 60mg a day. I am the only person in my country with this. I would really like to talk with anyone else in the same boat. I am normally a very active 30 year old woman, and I am finding this rather hard to deal with especially now the effects of the steroids are cutting in. I find the weight gain and facial swelling very disturbing. So if anyone can share their experience and feelingss with me I would be so greatfull. Thanks!