long time no see

dayle · 09-30-2006, 04:16 PM

Quote:

Originally Posted by dumblonde

Hi Dale,

I receive IVIG here and I've got the track marks to prove it.

I wish you could find a doctor there who was willing to prescribe it. I'm not the only one here either (nor am I a baby or baby-producer

) So sorry to hear of your challenges with your daughter.

Wishing her, and you, the best.

Hi DB:

So they are using it at the centre out there? How are you responding? Which form of IVIg is it? Dr Freedman had stated they were working on a promising form- a newer class. I was hoping it would get to trials because my osteo is so bad i really really don't want to risk steroids again. My neuro mulled it over, and told me a recent study was disappointing and that it would not be available-but i cannot find results for any recent ivig studies, so i don't know what the heck study he is referring to.

Patricia · 09-30-2006, 05:38 PM

Quote:

Originally Posted by lady_express_44

Hi Patricia . . . another Canuck, eh? Glad to see you found your way here too!!!

So you did have access to IVIG in Canada, but for another condition? If so, it would seem we could probably get it for MS, off label.

(I am on LDN, off-label).

I like caution too . . . but am glad that there are brave souls out there who are willing to pave the way for us more conservative types.

Cherie

Yes, I know a few people who are getting it in Canada for other conditions such as Dayle mentioned,

Guillan-BArre(sp), mysathenia gravis, hashimotos, and they are using it in pediatric ms, also CIPD and MMN (multifocal motorneuropathy) which is what I was originally diagnosed with.

Quote:

SallyC...
Patricia, Hi my Friend. How are you doing?

So glad you are here. I've missed you.

Hugs,

Hi Sally, I have missed you too.

Cherie · 09-30-2006, 07:45 PM

Maybe if enough of you from Canada can share your experiences, Dr. Freedman would have to listen and effect some changes in Health Canada's treatment protocol. I'm about due to contact him again so if I need to put in a word...just let me know

endure · 09-30-2006, 09:08 PM

Quote:

Originally Posted by Cherie

Maybe if enough of you from Canada can share your experiences, Dr. Freedman would have to listen and effect some changes in Health Canada's treatment protocol. I'm about due to contact him again so if I need to put in a word...just let me know

sure then, see what the two of you can do

.... thanks and good luck!

Judy2 · 10-01-2006, 05:14 AM

Welcome back Dayle!! It's great to see you and so many more familiar names. But, I'm so sorry to hear about your daughter's problems. As if you don't have enough already to worry about.

Take care.

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