Neuromuscular In memory of Rose Marie.


advertisement
Reply
 
Thread Tools Display Modes
Old 03-23-2011, 01:52 PM #11
Edfe Edfe is offline
New Member
 
Join Date: Mar 2011
Location: Eastside of Seattle Area
Posts: 3
10 yr Member
Edfe Edfe is offline
New Member
 
Join Date: Mar 2011
Location: Eastside of Seattle Area
Posts: 3
10 yr Member
Default

Hey Twitchfly
As it happens I am seeing my Dr tomorrow Friday March 24th, would you like me to find out the IVIG product and dosage I am currently getting. What surprised me was not all products for the IVIG are the same; some work better than others. I am on a study now for FDA approval of IVIG as a treatment for MMN and the stuff I'm using now is more effective than what I got prior to the study.

If you interested let me know.
Ed
Edfe is offline   Reply With QuoteReply With Quote

advertisement
Old 03-23-2011, 02:35 PM #12
twitchyfirefly twitchyfirefly is offline
Junior Member
 
Join Date: Jul 2010
Posts: 49
10 yr Member
twitchyfirefly twitchyfirefly is offline
Junior Member
 
Join Date: Jul 2010
Posts: 49
10 yr Member
Default

Quote:
Originally Posted by Edfe View Post
Hey Twitchfly
As it happens I am seeing my Dr tomorrow Friday March 24th, would you like me to find out the IVIG product and dosage I am currently getting. What surprised me was not all products for the IVIG are the same; some work better than others. I am on a study now for FDA approval of IVIG as a treatment for MMN and the stuff I'm using now is more effective than what I got prior to the study.

If you interested let me know.
Ed
Totally! Yes, thank you. I didn't qualify for any studies because they can't document an actual conduction block, which is interesting because the newer research I read about defining MMN is starting to tend toward not caring much about actually documenting a conduction block.
twitchyfirefly is offline   Reply With QuoteReply With Quote
Old 08-16-2011, 12:58 PM #13
ChrisSabin ChrisSabin is offline
New Member
 
Join Date: Aug 2011
Location: Grantham, NH
Posts: 2
10 yr Member
ChrisSabin ChrisSabin is offline
New Member
 
Join Date: Aug 2011
Location: Grantham, NH
Posts: 2
10 yr Member
Default IVIG treatment for MMN

Quote:
Originally Posted by Kelly in Oklahoma View Post
I've been diagnosed with MMN w/ CB and finished Round #1 of IVIg treatments (5 treatments in a week). I've already noticed improvement. I'm wondering if others with MMN that have had IVIg treatments for years have regressed back over time or if some have maintained the same level of initial improvement. I'm curious about what to expect down the road. Thanks for any thoughts & info.
Kelly,

From what I know about IVIG and MMN you could be looking forward to years of good health as I did (14), and that was after having MMN for 13 years before being treated. Some friends who were diagnosed and treated early needed only occasional infusions to maintain their levels.

There was gradual weakening over the years in my case, not painful, just annoying foot and wrist drop - to the point where now IVIG has ceased to work -but not complaining! Am looking for alternatives. Be glad to answer any further questions about my experience with MMN and IVIG. Best of luck. Chris
ChrisSabin is offline   Reply With QuoteReply With Quote
Old 08-16-2011, 03:11 PM #14
twitchyfirefly twitchyfirefly is offline
Junior Member
 
Join Date: Jul 2010
Posts: 49
10 yr Member
twitchyfirefly twitchyfirefly is offline
Junior Member
 
Join Date: Jul 2010
Posts: 49
10 yr Member
Default

Quote:
Originally Posted by ChrisSabin View Post
Kelly,

From what I know about IVIG and MMN you could be looking forward to years of good health as I did (14), and that was after having MMN for 13 years before being treated. Some friends who were diagnosed and treated early needed only occasional infusions to maintain their levels.

There was gradual weakening over the years in my case, not painful, just annoying foot and wrist drop - to the point where now IVIG has ceased to work -but not complaining! Am looking for alternatives. Be glad to answer any further questions about my experience with MMN and IVIG. Best of luck. Chris
For myself, I don't know if the IVIg is helping or not. Been on it for 15 months.

Being unable to find an online support group dedicated to MMN, last weekend I set up a forum just for us at http://www.mmnforum.com/forum

One of the categories is Alternative Treatments, which I am also looking into. I hope fellow MMN patients will take a look and share their experiences.
twitchyfirefly is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -5. The time now is 01:17 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.