Hopkins experience

After spending 5 months and visiting 30 doctors to figure out what was wrong with me, I finally ended up at Hopkins in April, 2007. I had a temporary diagnosis of CIDP that same day, and the diagnosis was later confirmed by nerve conduction and other tests, all of which confirmed CIDP. The one test I elected NOT to have was the sural nerve biopsy.

My doctor wanted to wait and watch for several months before starting treatment, and when retesting several months later, with worsening symptoms, put me on IVIG treatment. The couple of headaches that I developed with IVIG treatment were banished with a pretreatment of Decadron (dexamethasone). I elected to have the treatment at Hopkins rather than at home, in the event something happened and I needed immediate care. My infusion treatment was at the outpatient floor of the cancer center. Hopkins has a very specific treatment protocol for the delivery of IVIG by infusion, and I never developed any negative effects of IVIG treatment, except for the few headaches in the beginning, which were handled as I described above. My understanding is that this IVIG treatment protocol is the “gold standard” for administering IVIG with minimal side effects.

After the loading dose, my treatments were at 3 week intervals, and after an excellent initial response, the treatment intervals were extended to 4 weeks. After a little more than 18 months on treatment, my doctor wanted to wean me away from the IVIG. My response at that time was 100% recovery of motor nerves and about 90% on the sensory nerves. The taper off of the IVIG was completed about 18 months ago, and I have experienced nothing except the gradual resolving of the remaining sensory problems. I was also prescribed gabapentin for the nerve pain and discomfort. I am still taking it, but will be tapering off of it in the near future.

My doctor was continually involved in treatment decisions and protocol. He is one of the world’s top experts on peripheral nerve disease. The Hopkins staff at all phases of treatment were stellar. I have since become good friends with my doctor, and we get together about once every 4-6 weeks for dinner and to chat about each other’s work.

I realize that I am probably not typical of many who post here and who have had major issues of one nature or the other in being treated for this horrible disease. I do know I was misdiagnosed early in a search for answers for my symptoms by the head of neurology at another major local hospital, so I have tremendous empathy for those having problems getting an accurate diagnosis.

I strongly recommend a visit to Hopkins. Yes, they have housing, and shuttle service, although I do not know the details because I live in the Baltimore area and consequently have no need of either. Certainly, a consultation can provide you with options for local treatment, as well as confirming the diagnosis and a good discussion of different treatment options. IVIG worked for me, but it does not work for all. My doctor’s name is Dr. David Cornblath, who is also a Professor of Neurology at Hopkins. You might ask for him by name. I hope this helps you in making a decision.