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Old 05-08-2007, 02:02 PM
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MelodyL MelodyL is offline
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Join Date: Aug 2006
Posts: 8,292
15 yr Member
MelodyL MelodyL is offline
Wise Elder
MelodyL's Avatar
 
Join Date: Aug 2006
Posts: 8,292
15 yr Member
Default Neuropathy Support Group Meeting In Nyc

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
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