John Hopkins University and North Shore Univerity
AnonymousFebruary 18, 2011 at 11:51 pm
I live in Florida now but Long Island, New York is where my home roots are. My IVIG treatments were done at North Shore University Hospital in Manhasset (excuse spelling), but you may be going to another North Shore location. I had a really good neurologist at Manhasset Hospital, but he moved to another state in 2003/2004. North Shore has a good reputation.
AnonymousFebruary 19, 2011 at 9:53 am
I am going to the one in Manhausett, That was reccomended by the foundation as well as John hopkins. I am just looking to see what people felt about either place. It has been a huge financial strain this disease and just need to keep going deeper in debt to get stable
AnonymousFebruary 20, 2011 at 9:03 pm
Good luck at Manhassett! Expect retesting!
[url]http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery-[/url] and go from there?
I’ve read reports from soo many who have gone to the big 3: Mayo, Hopkins and NY Presby…and the key is the docs YOU get into see? Also, look up the key diagnostic docs you think you need and see if their ‘papers’ printed are close to what you feel. I know nothing about Long Island.. I’m further south?
I almost got an appt w/Hopkins? But got an appt w/a neuro dept head at Georgetown, which was closer to me. I was able to do the intro and some key testing there, while doing a heap of other testing nearer to home. Got my diagnosis and, BTW? I’d gotten into that appt due to another persons’ cancellation! All testing and subsequent follow-ups were done locally and rite on target…for me. So don’t give up? I do know that Hopkins has some temp patient housing [tho know nothing of the details], but that there is also shuttle service from the hospital to the housing.
The quirky thing about cancellations is tho…that if they call and ask if you can come in ‘tomorrow’? Can you? I’d asked for 2 days notice so I could marshall up the energy just to get to the doc AND BACK? By myself. I was a wreck for 2 days after each ecursion? But it was well worth it! And it didn’t take 8 weeks to see the docs I needed to!
First tho? Get copies of all MRI’s x-rays and medical records from all your docs that you can get your paws on…Likely you WILL be retested? But, sometimes, as I was able to..you can set your terms and times w/less hassles.
I’ve found that one doc never trusts the test results or quality of results done by others than those the doc trusts? So expect retesting of mostly everything! It is a price we must endure both financially and physically in getting diagnosed.
I wish you luck and hope that it all works out GREAT..that you get some answers to boot! Never accept ideopathic! There have to be some connections between onset and results…trick is to find them? Sometimes it can take years, but they show up in the end.
Keeping faith and hope!
AnonymousFebruary 21, 2011 at 2:15 pm
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.
AnonymousFebruary 24, 2011 at 12:34 pm
I am receiving IVIG treatments for the past year. I’ve been hearing about the renown Hopkins University and their “IVIG protocol”. I live in California and my neurologists is treating me with a trial and error IVIG. I want to know if Hopkins has a “written IVIG protocol for CIDP” that I can get a hold of, so that I may show it to my doctors. Anyone who has been seen at Hopkins, can you let me know please. Thanks.
You must be logged in to reply to this topic.