Hi All:

I got a postcard from the Neuropathy Association.

They are having a support group meeting on May 17th from 6 - 8 p.m.
It is only for people with Neuropathy. Any kind of neuropathy.

The place is:

CBS BUILDING
51 West 52nd Street
New York City
East of 6th Avenue. Take elevator to 33F
DATE OF MEETING: May 17th. from 6 - 8 p.m.

If you wish information e-mail:
ireneshb@aol.com

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I just got off the phone with her. She has CIDP and has been on IVIG for 11 or more years and she gets it every other week. That's a lot of IVIG.

She told me IVIG is not for pain, it's for the immune system.

We spoke about lyrica, neurontin, etc.

She also said the best place for Peripheral Neuropathy is in NYC, and I said 'yeah, I know, At Cornell, with Dr. Latov and she said 'absolutely".

So she knows neuropathy. She advised me to get Alan to go and see Dr Latov. Now I have no idea if Alan wants to put any more effort into this neuropathy thing after 18 years. He is waiting on his 8th infusion.

We also spoke about B-12. I don't think she was familiar with this.

She also never heard of these message boards. I sent her the link to the CIDP boards at the Guillaim Foundation forums.

So hopefully, if all is well, I'll drag Alan to this support group on the 17th of May.

Will update.

Melody

P.S. I may even bring my muffins

Thank you for posting this message about the support group on May 17th in NY. I've never attended one before and I'd really be interested in checking this out. Thank you.

No problem. I certainly hope that Alan and I can attend.

It would be nice to go to a different support group than Gamanon and Aspergers.

lol
Melody

I don't agree with the part about the IV's not being for pain. Maybe not directly-like pain medication would, but indirectly in an immune based neuropathy, I think so. If you have inflammation of your nerves, I am pretty sure I recall my Immunologist telling me that this would help... Inflammed nerves=screaming pain...

Cathie

Does this group still meet? I've tried calling the phone # I found *admin edit*, but all I get is an answering machine with a generic message and no one calls back.

Any help, please. I would truly enjoy some support right now. Thanks.
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It looks like meeting info is still listed on the site -
http://www.neuropathy.org/site/PageS...sup_us_newyork

You can try to email them using the links on the contact section there.