Houston center of excellence..for diagnosis??
AnonymousAugust 13, 2011 at 4:57 pm
I’m over 2 years now without a diagnosis. It started with mild GBS in 04 and a relapse in 09 that has continued to get worse. I now take 1200 mg of Gabapentin daily. I’ve had A LOT of bloodwork including rheumatological factors, Lyme disease, diabetes, etc..
MRI’s of brain and c-spine and I just had an EMG/NCV. However, the EMG was done by another doctor and in an ICE COLD room (I’ve read on here that the room should be warm..so, don’t know if that made a difference.)
Anyway, my neurologist still looks like a deer in the headlights:confused: and said that the EMG didn’t show any neuropathy! However, I know my body and I’m clearly have the same type of symptoms as neuropathy. I’ve been reading this forum for a long time and the symptoms I have are the same except not as severe as many of you..but..I can feel it getting worse all the time and the progression seems a little faster now.
I’m at the end of my rope!! I really want to get a grip on this before it get’s worse! I need a diagnosis and I’m starting to think that’s not going to happen in Florida! Doctors just don’t seem to know much or care here.
I can’t keep waisting time or money (I’m self pay) on trying to find a diagnosis. The Houston center of excellence would be a road trip for me (I’m in the Sarasota area of FL) but if I can afford it and IF THEY CAN GIVE ME A DIAGNOSIS, I’m willing to take the trip. Does anyone here have experience with the Houston center??
Thanks for any info!!
AnonymousAugust 16, 2011 at 2:44 pm
May I suggest that you consider Johns Hopkins Hospital. It is approved as a Center of Excellence by the GBS-CIDP Foundation, and its Department of Neurology is ranked #1 by the most recent US News & World Report. At least one of its doctors is one of the medical consultants to the GBS-CIDP Foundation. There are many flights between Florida airports and Baltimore Washington International Airport (BWI). I was diagnosed in April, 2007 by Dr. David Cornblath, at Johns Hopkins, after 5 months of running around to just about every kind of doctor I could think of (total of 30 doctors). The last one was at Hopkins, at which a diagnosis was made fairly quickly. My doctor wanted to give my situation a little time to see if it improved on its own, but after it worsened, I started IVIG treatment in early October, 2007. The results of my treatment have been most successful. My IVIG treatments were done at Hopkins, and they have a superb protocol for the administration of IVIG.
Getting a good diagnosis is perhaps the most important part of this struggle, and I think a visit to Hopkins would be well worth while. People in the Baltimore area take Hopkins for granted far too often. I live only 30 minutes from the Hospital, and was scared silly to have to go there; only the very sickest people go to Hopkins. However, as Dr. Cornblath has pointed out, anytime you have a rare disease or condition, your best choice of treatment will almost always be one of the major research hospitals.
There are a total of 10 medical institutions which have been approved so far for the Center of Excellence Program by the GBS-CIDP Foundation. Choosing one of them for your evaluation would probably save you a lot of time and headache. I hope this helps. If you would like more information, please feel free to PM me, but be aware that I check in only about once a week. My prayers are with you.
August 16, 2011 at 9:29 pm
curious of what the ivig protocal was for your ivig at john hopkins? I considered going there for my second opinion–read good things about it, but I ended up going to Rochester Mayo. Was pleased with my Dr and diagnosis from there–even though it was a week from hell with side effect from the lumbar puncture. My ivig schedule from there—Dr Dyck –is 0.4 gms per kg 2 x per week for 4 weeks then 1 x per week for 12 weeks. Im only 2 weeks in right now. Wondering if john hopkins protocal is similar? Lori
August 16, 2011 at 9:38 pm
Did a search and the only member who i found that posted that they actually WENT to Texas/Houston was Pat G—may try pming her to see if she is on and can give you any first hand info on the place. there were a few other posts noting that it was one of the centers for excellency but not that they had personally been there. That must be a driveable place to go from where you are—right??? probably a looong drive though. Good Luck Lori
AnonymousAugust 17, 2011 at 2:53 pm
I also had a lumbar puncture at Hopkins, but declined the sural nerve biopsy. The lumbar puncture was performed by one of the senior residents who, according to my doctor, did a dozen or more a day on a regular basis and had far steadier hands. Indeed he did. The lumbar puncture was painless, and I took it easy for the rest of the day. I followed strictly their post-puncture recommendations and suffered no adverse effects at all. Lucky perhaps, or maybe the senior resident was as good as advertised.
With respect to the IVIG, my loading dose was 2 gm/kg of body weight, divided into 5 doses and given on five consecutive days. This was all done at the outpatient floor of the Hopkins cancer center because, as my neurologist told me, they were by far the best at Hopkins in performing infusions. I was very much impressed by the professionalism and care at all times throughout the process. I suffered mild headaches on two of the 5 days. I started the loading dose treatment on a Monday, and concluded that Friday. I did all my infusions as an outpatient because I live only 30 minutes from Hopkins.
Thereafter, I received 1 gm/kg of body weight every three weeks thereafter. After mentioning the headaches to my neurologist, he made a comment to the effect that, “well, we’ll take care of that.” Thereafter, in addition to the premedication with benedryl and tylenol, I also received, via IV, premedication with 20 mg of decadron (dexamethasone).
Hopkins also does something else most interesting with the administration of IVIG. They co-administer a saline solution. I usually used up a 200 gram (I hope I remember these numbers correctly) bag of saline, sometimes more, during the infusion. This was the large bag. So, for each infusion there was the bottle of IVIG and the saline bag, and two infusion pumps regulating each.
In addition, Hopkins started the infusion very, very slowly, and ramped it up in 5 stages. Stages 1 & 2 were 30 minutes each, stages 3 & 4 were an hour each, and stage 5 was until the infusion was completed. I believe that they doubled the rate when they moved from one stage to the other. I believe the maximum rate at stage 5 was around 188. So, as a 175 man, the infusions were about 80 grams of IVIG, and they took 6-7 hours. I always took plenty of reading material, and sat in a nice, comfortable chair, and read throughout the day. I brought a sandwich for lunch and a friend just in case I encountered a problem with the drive home. I also enjoyed a generous cup of chocolate ice cream from a shop in the building’s lobby for desert. After around 15 months of IVIG treatment, my recovery was excellent and my doctor lengthened the interval to 4 weeks for several months, and then the amount of the infusion was progressively decreased until we stopped the infusions quite two years after we began.
At my first visit for the loading dose, the charge nurse printed out for me the Hopkins protocol for administering IVIG. It was 12 pages long, and quite detailed. Apparently, because the Hopkins infusion center primarily treats cancer patients, they have very detailed protocols for the administration of all their drugs, and they strive to control adverse reactions in every way reasonably possible. Counter to what most people have said on this forum, I never made any effort to drink extra fluids or do any other preparation for my infusions. I do believe that the co-administration of saline along with the IVIG, pre-medication with decadron, and slow and steady ramping up of the speed of administration of the IVIG were major reasons that I never encountered any problem whatsoever, except for those two mild headaches during the initial loading dose.
I may also be different from many in that the results of my treatment were truly exceptional, although it was not until after the second treatment following my loading dose that I started to notice improvement. After that, improvement was rapid. It has now been two years since my last infusion. I am physically extremely active, have full strength, exercise regularly, and travel a lot. I have also developed a fine friendship with my doctor, and we get together for dinner once every 4-6 weeks. Yes, we do talk about CIDP, treatments, research, and the fact that he sees so many patients who have been misdiagnosed. He is one of the doctors on the leading edge of treating this terrible disease. Again, I must emphasize that everyone is different, and people react to treatments differently. I may simply be lucky in that I responded well to treatment with no adverse effects, and I am sure I am lucky that in my search for a diagnosis for hellish symptoms finally brought me to Hopkins. I certainly was impressed by everyone at Hopkins, and in the general care they provide to their patients. Of course, not everyone may agree with that view either. These are some of the reasons I strongly recommend Hopkins to others.
I hope this helps. If you would like further information, may I suggest a PM.
AnonymousAugust 19, 2011 at 10:51 pm
I am from Florida, north of you but travel to St Pete just the other side of the bridge on 5th Ave to St Anthony’s Medical Center to see Dr Allan Weiss. He is experienced with CIDP and may be able to help you. 727-820-7701. Good luck to you! Let me know if you get to see him and how it works out for you thru him or otherwise. Prayers for you too! 🙂
AnonymousAugust 31, 2011 at 10:40 pm
Call the Galveston Hospital. Try and get in to see DR. Smith. He is also at a clinic in Pearland. He is the head of the Neurology Dept in Galveston. He knows CIDP better than anyone in Houston. I went to him not walking after hip surgery and my orthopedic DR. couldn’t figure out why I kept falling, had nerve damage in my hands and feet. First visit with Dr.
Smith and he told me what I have and put into action a plan for me.
I am also self pay but Galveston has programs that really help.
Lori if you can get an appointment with him I know he can help I don’t know about the Houston Center but
Dr. Smith would.
September 1, 2011 at 9:05 am
I get Gamunex-C (sucrose free) for my IVIG and it is not compatable with saline so they flush me before and after with 5% dextrose and water. I hear that the IVIg that has sucrose in it is worse on your kidneys. I have had good response with the Gamunex-C. No major side effects as long as they run it in slowly. We don’t go above a rate of 100 starting very slowly and ramping up every 30 minutes. It takes me about 5 hours to get my infusion and I am only 120 pounds. But I would rather be in the infusion center for a long time but then go home feeling good and not getting the headache that I got on my loading dose.
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