My spinal taps were normal and EMG’s while off, were not conclusive, so I had the sural nerve and thight muscle biopsies. Had an excellent neuro surgeon and had no problems with either site. Got positive confirmation on the CIDP dx. Only residual is a numb spot on the side of my foot where the sural nerve was removed. Never experienced any pain at either site. It has been 13 years now.
Fred

Hi RJmutz

As one who went through GBS, and now relapsing CIDP, I agree with
Angel2ndclass’ coments about CIDP. From your short post, it does not appear the doctors are very interested in your daughters case. Have you considered the Univ of Texas neuro clinic in Austin for a second opinion? If memory serves me correctly from the last symposium (and some times it does not) they have several doctors who specialize in GBS and CIDP. Has your daughter been tested for CIDP? Have they also checked/tested her for other neuro diseases such as MS, Parkinson’s, etc? Has your daughter’s doctor or her physical medicine doctor handled any other cases of GBS?
It is a tough disease, physically and mentally, but keep after it. A second opinion from someone who specializes in rare neuromuscluar diseases may be a fresh start for your daughter and give her some hope for the future. Good luck to you both.
The chair mentioned in another post is a good idea, but a teen will have issues with a wheel chair just because. I have a very small flashy red 4 wheeler scooter that weighs only 65 pounds and folds up to carry on luggage size in about 10 seconds and I can take it anywhere. It runs 10 miles on a 6 hour charge. I have a lot of fun with it and gives me opportunities to get out and enjoy things requiring lots of walking, that I would not otherwise be able to do. This may be something that would encourage your daughter to get out to the mall to shop, go to a movie with some friends, etc. while keeping the pressure off her legs. I’ve used mine to tour college campus’s, car shows, antique malls, acquariums, etc. Since it is not my electric chair, I never get a second look, other than people who want to know where they can get one. No one associates this little red scooter with physical limitations.
Look for the positives in what you can do, rather than dwell on the negative of what you can’t.

Yes, there is a difference in IVIG Brands. Gamunex is the only brand processed using Glycene (amino acid), while all the others use sucrose. Gamunex was approved by the FDA for treating CIDP in September of 2008. I had been on other IVIG brands several times over the years with no response, however when they tried Gamunex in December 08, I began to see improvement, which continues. I get 200 grams every three weeks.
Fred

Jan,
Yes, Gamunex is almost the same cosistancy as Kayro. Because of this, they infuse me at a 250 mg/hr rate and I have no problems. If they run it faster, I get headaches and swelling at the infusion side, then usually get a pretty bad rash a day or two after the infusion. Have not had those side effects at the 250 rate. I have another one scheduled for Friday.
Fred

Hi Redchipster,
I have been fighting cidp for nearly 14 years now with the past 2-3 showing a slow but steady decline across the board. I’ve been on imuran, cellcept, cyclorsporan retuxan, oral prednisone, PE, etc. The progression was slowed significantly with PE and IV solumedrol every 2-3 weeks for several years, but when my progression began to speed up, I tried pretty much everything else out there including four MS drugs, two of which are still in clinical studies. With no results from the MS drugs and PE and IV solumedrol no longer slowing things down, I asked my doctor if I could try Gamunex, brand specific IVIG, since it was approved by the FDA for CIDP in September 08. I know that for a drug to get FDA approval for a speciffic illness, there has to be something different from similar medications in order to obtain such approval.

My doctor reminder me that we had already tried IVIG several times over the years with no success. He told me all IVIG products were the same, however when I researched Gamunex, I found that it is processed using amino acid rather than sucrose used with all of the other IVIG products. When I showed him the clinical results for Gamunex, and how they were better than “regular” IVIG, he agreed to put me on it for 6 months to see if it worked.

And WOW, what a treasure find this has been for me. After just three months, my improvement has been so good that he plans to take me off PE and IV solumedrol and just use Gamunex if I am the same or better when I go back in August. I currently get PE and 500mg IV solumedrol one day, then 100 grams of Gamunex the following day, every three weeks. Neither the doctor nor I know why it is working, but it is, which is the only thing that matters. My walk gaint is nearly normal, I can again drive for hours at a time, can do yard work and hobbies, things that just 4 months ago were not possible. Sorry to ramble, but my message is to not give up and keep searching for different treatments or treatment combinations until you find the one that works for you. It took me nearly 14 years to hit on Gamunex, but I now see improvement every day vs the daily decline for so long. Good luck.
Fred

MAC34,
Sorry to here about your difficulties,but don’t give up. Have you tried to see someone at Duke? If you are on SSDI and have a CIDP dx, no way should any doctor suggest you are drug shopping. That simply shows their complete lake of knowledge about the disease.
On the positive side, I bought an electric wheel chair a year ago, November as I was excpected to be in it within a few months. But with changes in treatment, it is sitting. I have regained strength, mobility, endurance and a reasonably normal life. I stopped work 3 1/2 years ago and was approved for SSDI which is how bad I got, but it has turned around due to a neuro that was willing to throw everything know at it. After years of imuran, rutixan, various MS drugs, oral prednisone, IV solumedro, PE and IVIG, we settled on plasma exchanges with IV solumedrol which really slowed the progression, but did not stop it.

Then, when the FDA approved Gamunex last year(a brand of IVIG processed with glycene rather than sucrose) we opted to try IVIG again using this specific brand and wow, what a change. I am still doing PE every three weeks, then 100 grams of Gamunex the day after PE. This combination, for me, has not only stopped the progression, but I have regained so much lost over the years. Can now drive for several hours at a time, do yard work, shop, work on antique cars, walk up stairs, etc. All things that were not possible six months ago. But, this is how I have responded, and as you state, we all react differently to the various treatments. The key is never give up.

If you can’t find a doctor close to you that will offer treatment, Atlanta is a day trip for you, but the MS Center of Atlanta has some great neuro’s and I have been with Dr. William Stuart for over 12 years. As previously stated, he never once refused to try a treatment that might help.

I have a good friend ( has ALS) that sees Dr. Jonathan Glass at Emory. He specializes in neuro muscular diseases and was recommeded by two of the presenting neuro’s at the International GBS/CIDP Symposium in Chicago last fall. It takes a while to get an appointment with him, but Emory dose have its own in house PE unit.
Good luck and keep after it.
Fred

Hi Kevin,
What a difficult situation. As an ex insurance claims person I would suggest you check into a couple of things.

First, there was federal legislation passed and signed into law that says an insurance company cannot deny coverage for pre-existing conditions if you can produce a letter showing that you had valid coverge with another carrier(carriers as supposed to automatically provide you with this letter when your coverage with them terminated for any reason). I can’t remember the time frame, but I think it is 60 days from termination or loss of one coverage until you are again covered.
The second thing is to look at the policy you are now covered by and read the exclusion section regarding pre-existing conditions. Most policies have a 12 month period, however some are only six months, while others can be up to 18 months. Once this window is past, they must cover the pre-existing condition.
Lastly, did you wife’s coverage have an “open enrollment” period during which you were placed on her policy? If so, I don’t think they can use the pre-existing exclusion as it is typically waived during open enrollments.
Remember the “Rainmaker” book/movie. Insurance companies first line of defense is to deny claims. Ofter, after 2-3 denials, the patient gives up and they win. Call you state insurance commissioner and ask for some help.
Good luck,
Fred

Hi Kelly,
My GBS came after the swine flu vaccine in the 70’s. I took a “booster” tetnus shot 10 years ago while my cidp( dx’d in ’96) was “stable” and had no side effects. However, I had to sign a written waiver which stated that GBS could result from the shot and I would hold them harmless. At last weeks annual check-up, my internist wanted me to take another tetnus booster. I told him I would defer to my neuro, but am having second thoughts about the potential side effects. Like many, I now think I would rather take my chances. Good luck.
Fred