Support Group in NYC ??

Try this link and filling in the appropriate information: http://www.gbs-cidp.org/home/get-support/chapters/. I don’t know exactly what happens: if you get contact information right away or if the Foundation will e-mail you with contact information.

WTF,

Actually, you are not too far off. Last I knew, there were all of four people on paid staff with the Foundation.

If we had the private message thing we had before, I would send you a PM with the names and numbers. If the liaisons’ phone numbers were listed, I would give them here. Unfortunately they are not. Try again on Monday and let me know. If you don’t get anywhere, let me know and I will figure out something else.

Best regards,
MarkEns

Question to all –
I am interested in chatting with someone locally, but a little leary of putting down so much info (ahh the telemarketers have scared us all off!). Can anyone share their experience with this? Who will be contacting me? Does this contact info get sold to a telemarketer for CIDP products? shared with insurance companies? Etc. Sorry to sound so paranoid – I live my life very openly but have learned to be cautious over the internet. Thanks for feedback.

PattyO,

The Foundation newsletter, which comes out about once a quarter, has an insert of all of the liaison’s contact information. You then call or e-mail the liaison to initiate the contact. If you don’t get the Foundation newsletter, you can call the Foundation. They will then give you the name and contact information of your nearest liaison. Some liaisons have secondary contacts that they call upon. If you want to talk with one of them, the liaison will give you his/her contact information.

Another option is to ask your neurologist or infusion nurse if any of his/her patients are willing to talk with others. It is a little difficult for this coordination to happen because of HIPAA restrictions, but it can happen.

Thanks a lot for the info, Mark. I will check out the newsletter. Thanks, too for this forum ( I assume you are a sr. member) and for the gift of communication. We do not feel so alone, thanks to this forum.

Hello to all! I am looking for support groups, chats, doctor names, resources, act in New York City area and Hoboken, NJ. I was diagnosed three weeks ago with CIDP after many tests to rule out MS, cancer, DermoTSytis, etc., My nerve biopsy concluded CIDP, but because it took 2 years to get there (my first two doctors didn’t bother to even test me, I ended up in a hands of a total “quack” who convinced me to have a SCS implant, which was totally useless for me and my horrid pain, and very helpful to his $$$ pocket. Only after a year I finally left him, was able to find a neurologist, who then send me to remove the SCS implant (surgery), because I couldn’t get MRI tests, etc with the implant. SO, ever since February 18th, when I had my SCS removal to now, I had one procedure after another, which I am grateful for – my CIDP is so old and well progressed, plus severe Neuropathy in my feet and just as sever nerve damage in my feet, which makes for one nasty and very painful condition… I need help with pretty much everything – doctors in a field, hospitals, support groups, personal stories (whoever is willing to share), advises, suggestions, anything please… It’s very lonely out here …

Dear Ksasha,
it’s ok to feel lonely…. i know what u mean. but u are truly NOT alone at all. it being a rare disease, CIDP doesnt get enough attention i think. so we’re left feeling alienated and maybe forgotten about… like living on the island of misfit toys. i was diagnosed in 2005 …eight years later, i too battle the constant pain in my feet and awful nerve damage that seems to be all-consuming some days. i do everything possible to stay healthy and fit (diet and exercise) …i have mostly good days, but the bad days wear me out. my CIDP “arsenal” includes mainly a positive attitude, a lot of “being good to myself” (massage therapy, aromatherapy, time off, etc) and a LOT of gratitude for all of the GOOD in my life… these things really help alot. …so, im able to cope. Acceptance is key. ..and distraction from the disease by doing things u really like to do and surrounding yourself with people u truly love to be around… sounds like u have been through alot already, i hope things get better. i just thought i’d reach out and try to allay your fear of lonliness or despair. (or both). ive never really pursued a real live support group other than this forum. …might be nice to actually talk to someone who understands what we go through. my name is Steven and i wish u all the best. S

Hi,
This is my first time posting so please bear with me, as I am going to ramble on a little. First of all, I live primarily in Eastport, NY but have an apartment in NYC, which I reside at approximately 2 or 3 days during the week. I was recently diagnosed with CIDP, but have had symptoms for at least 6 years. I would assume my case is slow progressing, but has recently it has accelerated. Three weeks ago I had my second EMG (first one 3 years prior, but did not follow up with a neurologist-my dumb mistake). I have experiences severe numbness in the balls of my feet and some in my toes. I had tingling up my right leg into my kneecap, which was experiencing numbness as well. Maybe it was just a coincidence, but after having the test I began to notice the muscle loss and weakness in my feet, calves and knees. I felt as though my legs would buckle for a second and I would just drop (but didn’t). Fortunately for me, I do not experience pain (occasionally a shot of pain, like a shock up the outside of my leg), but overall pain free. I have noticed my hands looking more web like, and realize there is muscle loss there as well. I still feel like I have very strong hands, and my legs are thighs are strong as well. However, tests results showed significant nerve damage and muscle loss – and was diagnosed with CIDP. Other symptoms included having Raynaud’s disease (which I have had since I was 20 – now 66), hair loss on the outside of my calves, hammer toes; which were said to be in the same family as CIPD. I mention this, because the word should get out to the medical community that common symptoms to the disease, may lead to earlier diagnosis.

I started IVIG treatments last Thursday and Friday at NY Presbyterian Hospital (my doctor is on staff – Assistant Professor of Neurology and Neuroscience at the Peripheral Neuropathy Center of Weill Cornell Medical College. I had little side effects from the two treatments (think I received 450mg but not sure) other than the second day with a slight headache and fatigue. Its probably in my head, but I feel a slight reduction in the numbness in my feet, but more in my legs and certainly more muscle fatigue in my legs. I’m having two more treatments this coming Thursday and Friday, and then every other week (for one day) for total of 3 months. Obviously, I am very concerned as anyone with CIDP would be, and hopeful the IVIG therapy works.

I haven’t had time to feel alone, because I have been to fearful of what this could lead to. However, I am beginning to get my “arms around it” and feeling more positive. If anyone would like to talk, write or get together to talk about our condition, I am available. I don’t know the protocol to exchange information, if you are feeling alone, I’d like to be there for you in anyway that would give you comfort or just someone else to share with. As you can see, I certainly had the need to share. Just writing everything down and sharing has been a positive for me. I wish you all the best and hope you improve in health and happiness.
Warmest regards,
Ron