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to Des L. re Val's email for neuropathy info.

Posted by caryn z on 11/14/02 at 19:10 (100173)

hi Des. sorry it has taken so long to reply to your post here. I'd be happy to give you and anyone else the email address for Val's support group. The website is still under construction so I can't give you the website address yet, but once it is up and running I will post it here for you.
The Calgary(Alberta)Neuropathy Support Group address is calgary.ab.nsg.@telus.net

Val is my mother and was diagnosed with Chronic Demylinating Inflammatory Polyneuropathy (CDIPN)3+ yrs ago. Currently she is undergoing a plasma exchange and has completed 2 months of treatments, with 3 more to go. The support group she has founded came about because there is nothing in Alberta or close to for support. She is in contact with Paul at the New York office of the Neuropathy organization which is full of information. So far her 3 meetings have yielded no less than 30 people at each and it has started off with a bang!

When you do contact her, tell her I gave you the address. You will find her very knowledgeable about neuropathy and I'm sure she will be of assistance to you.

Hope you are doing alright. Take care and keep in touch.

Cheers Caryn

Re: to Des L. re Val's email for neuropathy info.

Des L. on 11/14/02 at 21:58 (100191)

Hi Caryn,

Thank you so much for the address. You and your mother have surely been going through some very trying times. The support group seems like a real blessing for her. Thanks again and I hope to be in touch with her soon. Also I'll be following your posts to see how you're doing. Des L.

Re: to Des L. re Val's email for neuropathy info.

caryn z on 11/14/02 at 23:41 (100210)

heh Des. glad to hear you touched based with mumma. yes it has been a trying few years, first I tried to read up on her condition so I could at least understand what she might be going through - as support - and then lo and behold I get some of the same symptoms and they still can't say for sure that it's not genetically linked!

Keep in touch, I'll let you know how I make out with the surgical consult once I get the appt. Haven't heard from my doctor yet with regards to that. Hopefully I won't have to wait too long again to see surgeon.

Cheers,
caryn

Re: to Des L. re Val's email for neuropathy info.

Des L. on 11/14/02 at 21:58 (100191)

Hi Caryn,

Thank you so much for the address. You and your mother have surely been going through some very trying times. The support group seems like a real blessing for her. Thanks again and I hope to be in touch with her soon. Also I'll be following your posts to see how you're doing. Des L.

Re: to Des L. re Val's email for neuropathy info.

caryn z on 11/14/02 at 23:41 (100210)

heh Des. glad to hear you touched based with mumma. yes it has been a trying few years, first I tried to read up on her condition so I could at least understand what she might be going through - as support - and then lo and behold I get some of the same symptoms and they still can't say for sure that it's not genetically linked!

Keep in touch, I'll let you know how I make out with the surgical consult once I get the appt. Haven't heard from my doctor yet with regards to that. Hopefully I won't have to wait too long again to see surgeon.

Cheers,
caryn