Hello all.I have been going thru Ivig for almost a year and I have only gotten worse.Foot drop both feet,extreme weakness both legs and partial paralysis in one leg.I use a wheelchair and walker for limited walking.Not a clear cut diagnosis of cidp Neuro now suggesting me to see a specialist at Columbia Univ in NYC.I live in Florida.Has anybody traveled out of their state to see a specialist with positive results?Nervous about the expense,husband taking time off from work from small company he works for,etc...Thanks for any advice.
Hi. I have a neurologist in my home town, however when he first diagnosed me he wasnt sure it was cidp. He requested I go to Mayp clinic in Rochester MN (I live in NE) for confirmation. I went and it was a nice trip. You always feel like your getting the best at a Mayo Clinic. I was employed at the time and had insurance and the insurance picked up al the bills. Not sure what kind of insurance you have but you can always check with them to see if they cover it. Check the city where you will be going also to see if they have special housing for out of towners.
good luck
Hi...I'm not sure where you live...but I'm in Dallas, and had to change hospital systems to get the proper course of treatment-which ended up saving my life. The day that I walked into the new hospital, I was told I only had about 24 hours to live...and I was 34 years old. My previous neurologist had tried ivig's for 3 months, but the new group started plasmapharesis, and after about 3 months of treatment, I was strong enough to start physical therapy. I now have been on pharesis for about 18 months, and get a treatment every 10 days. Shame on your doc letting you go 1 year with negative results!! I would try a whole other practice, but maybe just the next closest city...not necessarily having to travel out of state. Best of luck to you and I think with doctors/insurances these days-you HAVE to be your own advocate and push for what you need; sometimes just a new set of eyes looking at your case gives a whole other level of hope :)
Hi
I tottaly agree with Mel having your Dr. go that long with no results is a crime.A new set of eyes sounds like the perfect solution.Good luck and stay strong
Thanks for your responses.I have had several Neurologists opinions…even a top specialist at University of Miami who is not certain what I have.I have been in touch with Columbia University in NY.Working out all the travel details and hoping to make the appointment when I call tomorrow for early December.Figured I might as well work around seeing the Christmas tree in NYC.I have no upper body symptoms.All lower…foot drop both feet,extreme weakness both legs and paralysis from thigh to calf in right leg.I do try to walk in my house wit my walker…try to stay out of the wheelchair when I can…but it is painful.I also swim almost every day…not giving up.Hoping and praying someone in Columbia can help.Thank you and good luck to you guys as well!!!
I live in fl as well… I have had CIDP for 12 years. It has been treated with IVIG (Gamma Gaurd) up until this past year. All of a sudden the IVIGs are not working. I was switched to plasma pharesis. It works great except I get admitted to the hospital for 10-12 days for it. So for the last 4 months I have spent 10-12 days in the hospital every month. In September I went to Cornel in NYC to see Dr. Russell Chin… Very nice Dr & did a thoro back round history & physical on me. Including an aweful emg & 12 vials if blood… But his insite & knowledge if CIDP impressed me. He had been working with my Nero down here in fl to treat me. I needed the second opinion from a specialist. It was comforting knowing that my diagnosis was correct & that Dr Chin had some ideas on how to get me back to my “normal” self… I would continue plasma pharesis if they would do it on out pt. But I cannot find a Dr to do it. Looking at new options now like Rituxan… Definitally go to NYC to see the specialist. Make sure ur diagnosis is correct & that ur treatments are right for u… Good luck
Heather
Hi Heather.Thank you so much for your reply.My Neuro has also recommended Dr.Chin!I have an appointment On Dec.6.My Neuro here in Florida is Dr Seth Tarras.I also have another appointment that afternoon With a Dr Chen and he is from Sloan Kessinger.Glad to hear about his expertise in CIDP because my doctor still not certain that is what I have.Good luck and I will keep you posted. Dori
Heather R said:
I live in fl as well... I have had CIDP for 12 years. It has been treated with IVIG (Gamma Gaurd) up until this past year. All of a sudden the IVIGs are not working. I was switched to plasma pharesis. It works great except I get admitted to the hospital for 10-12 days for it. So for the last 4 months I have spent 10-12 days in the hospital every month. In September I went to Cornel in NYC to see Dr. Russell Chin... Very nice Dr & did a thoro back round history & physical on me. Including an aweful emg & 12 vials if blood.. But his insite & knowledge if CIDP impressed me. He had been working with my Nero down here in fl to treat me. I needed the second opinion from a specialist. It was comforting knowing that my diagnosis was correct & that Dr Chin had some ideas on how to get me back to my "normal" self... I would continue plasma pharesis if they would do it on out pt. But I cannot find a Dr to do it. Looking at new options now like Rituxan... Definitally go to NYC to see the specialist. Make sure ur diagnosis is correct & that ur treatments are right for u... Good luck
Heather
Hi...This is also to Heather...Ivig's did not work for me, so we started plasmapharesis. Once I had a few rounds of it while being hospitalized and the doctors new it was working, I actually had to locate another hospital system in my area of Dallas that does it outpatient. So, for over 15 months now, I go every 10 days to the outpt clinic for treatment, and I'm home within a few hours. Good luck everyone :)
My doctor is in NYC as well. Although I only live in NJ...there is no comparison to the doctors in a city. Good luck with your trip. It will certainly be worth your while. Who is more important than you are:)
I live in Dallas, Texas and have a diagnosis of CIPD and for the last three months I have received infusions of IVIG. My condition has improved considerably – – my gait has improved my drop foot is considerably better.
I went to several neurologist in Dallas and none was able to diagnose my problem. For several years I went from specialist to specialist – – movement disorders, balance clinics, and any other specialist I could find and Several told me that they would treat me but they didn’t know what was wrong. This was after extensive testing MRIs, CAT scans blood test and so on. One neurologist recommended and gave me a referral to Mayo Clinic. I was put on the waiting list for an appointment. I read about and made an appointment with Dr. Jennifer Langsdorf. Dr. Langsdorf is on the neurology faculty at Wille-Cornell school of medicine in New York City. I was scheduled for an appointment on a Friday afternoon. Dr. Langsdorf examined me and recommended I return on Monday for more testing – – she administered the testing herself and gave me a diagnosis based on the results. My diagnosis is CIDP and the prescribed treatment is IVIG.
I did ask why no other doctor had made this diagnosis and was told that they are trained to look for the obvious – – and in our case the obvious is not correct.
I definitely recommend, if you can manage it, to go where ever is necessary for diagnosis and treatment. The treatments have really improved my quality of life. Good luck to you on your journey.
Look for centers of excellence certified for GBS and CIDP on line the GBS CIDP foundation international has a listing.
Columbia and Presbyterian Hospitals are excellent. I live in NYC and see Jennifer Langsdorf. I recommend their entire department. However, Univ. of Miami has an excellent Neurology Dept. specializing in CIDP.
Hoping you find treatment that works for you.
Ron