Home Menu

Site Navigation



NeuroTalk Support Groups > > >

Anyone with Anti-MAG neuropathy?

Reply
Page 14 of 16 « First 41213 14 1516
 
Thread Tools Display Modes
Old 07-01-2015, 01:53 PM #131
Mamasucci Mamasucci is offline
New Member
  
Join Date: May 2014
Posts: 3
10 yr Member
Mamasucci Mamasucci is offline
New Member
 
Join Date: May 2014
Posts: 3
10 yr Member
Default Female anti-mag just under two years.
Quote:
Originally Posted by lmba214 View Post
Didn't mean to take so long to answer NancyKay. Been busy with shoulder surgery, PT, pain clinic visits, applying for SSDI, etc. etc. I hope you are doing well as you can. My visit to the rheumy at Vanderbilt last spring was very disappointing. Nice guy and all but he wanted to blame ALL of my symptoms on fibro. Totally disregarded any previous test results. I give up on finding a Rheumatologist for myself, but found one for my son who is treating him for pain due to some kind of connective tissue problem.

I did get referred to another local Neurologist for arm pain. I'll take the anti-MAG and other previous test results, but I expect he'll just blow all that off like everyone else has so far. Guess I'm resigned to living with getting gradually worse. I don't have the energy or fortitude to keep looking for a doctor that knows about anti-MAG and/or is interested in investigating.

I hope you were able to get insurance to cover your treatments and that they have helped you feel better.
Hi! I live in the Chicago area and see a neurologist at Washington University in St. Louis. They treat Anti-mag. I have mostly sensory, no muscle. I have been seen 3 times. Mostly they check my balance and strength. Because I am not being affected yet in these area, I do not take anything. My feet hurt, but not bad enough for treatment. What does help when I can't sleep due to pain is lidocaine patch. I only use once every couple of weeks. Do not like ingested drugs, so no Lyrica for me. I was seen 6 months apart and now will go back in 9 months unless a change in balance or weakness etc. I swim and walk and do a lot of stairs. The doctors at Washington University Neuro-Science center are very knowledgable about Anti-Mag. They will not blow you off. Good luck,
Mamasucci is offline   Reply With QuoteReply With Quote
Old 07-01-2015, 04:22 PM #132
Kitt Kitt is offline
Grand Magnate
  
Join Date: Aug 2006
Posts: 4,440
15 yr Member
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,440
15 yr Member
Default
Welcome Mamasucci.
__________________
Kitt

--------------------------------------------------------------------------------------------------------

"It is what it is."
Kitt is offline   Reply With QuoteReply With Quote
Old 08-23-2015, 03:44 PM #133
lmba214 lmba214 is offline
Junior Member
  
Join Date: Apr 2012
Posts: 13
10 yr Member
lmba214 lmba214 is offline
Junior Member
 
Join Date: Apr 2012
Posts: 13
10 yr Member
Default
Quote:
Originally Posted by Mamasucci View Post
Hi! I live in the Chicago area and see a neurologist at Washington University in St. Louis. They treat Anti-mag. I have mostly sensory, no muscle. I have been seen 3 times. Mostly they check my balance and strength. Because I am not being affected yet in these area, I do not take anything. My feet hurt, but not bad enough for treatment. What does help when I can't sleep due to pain is lidocaine patch. I only use once every couple of weeks. Do not like ingested drugs, so no Lyrica for me. I was seen 6 months apart and now will go back in 9 months unless a change in balance or weakness etc. I swim and walk and do a lot of stairs. The doctors at Washington University Neuro-Science center are very knowledgable about Anti-Mag. They will not blow you off. Good luck,

Thanks for your info mamasucci! Their website has some good information on neuromuscular diseases and I've wondered about their clinical care. Nice to hear from someone going there and that you recommend it. I'm in the southeast, so going there would probably be doable.

I haven't tried to find a new neurologist yet, but probably should. The only good one I've ever seen, who ordered the anti-MAG test, is retired. The last one I saw was referred by my ex-Rheumatologist for forearm pain. NCV testing showed carpel tunnel and that was that. Still so many unanswered questions.

Hope to hear how you are doing in the future and that you continue to function without resorting to medication.
lmba214 is offline   Reply With QuoteReply With Quote
Old 12-29-2016, 07:14 AM #134
Isue Isue is offline
Newly Joined
  
Join Date: Dec 2016
Posts: 1
8 yr Member
Isue Isue is offline
Newly Joined
 
Join Date: Dec 2016
Posts: 1
8 yr Member
Default
Recently diagnosed with Anti-Mag. Three treatments of IVIG and no change. If treatment works, how long does it take? Has anyone been successfully treated?
Isue is offline   Reply With QuoteReply With Quote
Old 12-20-2017, 10:37 AM #135
Munger Munger is offline
New Member
  
Join Date: Dec 2017
Posts: 5
5 yr Member
Munger Munger is offline
New Member
 
Join Date: Dec 2017
Posts: 5
5 yr Member
Default Anti-mag
Hi,

I'm new to this forum. I've was recently diagnosed with Anti-Mag Polyneuropathy. My level of antimag is 48,045. I'll be seeing the hematologist next week to discuss treatment for pain in my hands and feet. I'm assuming they might suggest Rituximab or Imbruvica. Does anyone have a similar experience?

Thank you, I appreciate any input.
Munger is offline   Reply With QuoteReply With Quote
Old 12-20-2017, 03:17 PM #136
kiwi33's Avatar
kiwi33 kiwi33 is offline
Grand Magnate
  
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
10 yr Member
kiwi33 kiwi33 is offline
Grand Magnate
kiwi33's Avatar
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
10 yr Member
Default
Hi Munger

Welcome to NeuroTalk .

Recent evidence suggests that Rituximab is less effective than was initially thought in treatment of anti-MAG neuropathy Placebo-controlled trial of rituximab in IgM anti-myelin–associated glycoprotein neuropathy .

Imbruvica is usually used in treatment of some B cell cancers. Peripheral neuropathy is a known side-effect of this Imbruvica Side Effects in Detail - Drugs.com .

These things might be worth discussing with your haematologist.
__________________
Knowledge is power.
kiwi33 is offline   Reply With QuoteReply With Quote
Old 12-26-2017, 02:09 PM #137
Munger Munger is offline
New Member
  
Join Date: Dec 2017
Posts: 5
5 yr Member
Munger Munger is offline
New Member
 
Join Date: Dec 2017
Posts: 5
5 yr Member
Default
Quote:
Originally Posted by kiwi33 View Post
Hi Munger

Welcome to NeuroTalk .

Recent evidence suggests that Rituximab is less effective than was initially thought in treatment of anti-MAG neuropathy

Imbruvica is usually used in treatment of some B cell cancers. Peripheral neuropathy is a known side-effect of this

These things might be worth discussing with your haematologist.
Thank you so much, my anti-mag level is 48045. Is that considered high?
Munger is offline   Reply With QuoteReply With Quote
Old 12-26-2017, 04:18 PM #138
kiwi33's Avatar
kiwi33 kiwi33 is offline
Grand Magnate
  
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
10 yr Member
kiwi33 kiwi33 is offline
Grand Magnate
kiwi33's Avatar
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
10 yr Member
Default
Probably what was done was to measure your anti-MAG antibody level using an immunoassay (an ELISA). The results are usually expressed in Buhlmann Titre Units (BTU).

BTU <1000 is negative, BTU between 1000-3000 is low positive and high positive is >70000 BTU. So, your results are in the positive range.
__________________
Knowledge is power.
kiwi33 is offline   Reply With QuoteReply With Quote
Old 12-28-2017, 08:35 AM #139
Munger Munger is offline
New Member
  
Join Date: Dec 2017
Posts: 5
5 yr Member
Munger Munger is offline
New Member
 
Join Date: Dec 2017
Posts: 5
5 yr Member
Default
Quote:
Originally Posted by kiwi33 View Post
Probably what was done was to measure your anti-MAG antibody level using an immunoassay (an ELISA). The results are usually expressed in Buhlmann Titre Units (BTU).

BTU <1000 is negative, BTU between 1000-3000 is low positive and high positive is >70000 BTU. So, your results are in the positive range.
I saw the hematologist oncologist yesterday and have decided to proceed with the Rituxan infusions for four weeks.

I'll let you know how it goes, first one is Jan 5th
Munger is offline   Reply With QuoteReply With Quote
Old 01-17-2018, 05:03 PM #140
Munger Munger is offline
New Member
  
Join Date: Dec 2017
Posts: 5
5 yr Member
Munger Munger is offline
New Member
 
Join Date: Dec 2017
Posts: 5
5 yr Member
Default
Quote:
Originally Posted by Munger View Post
I saw the hematologist oncologist yesterday and have decided to proceed with the Rituxan infusions for four weeks.

I'll let you know how it goes, first one is Jan 5th
Well, my insurance won't pay for Rituxan so I'm waiting to hear about funding through the manuf. they won't pay for Imbruvica either.
Munger is offline   Reply With QuoteReply With Quote
Reply
Page 14 of 16 « First 41213 14 1516

« Previous Thread | Next Thread »
Thread Tools
Display Modes
Linear Mode Linear Mode

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

Similar Threads
Thread Thread Starter Forum Replies Last Post
Anti-MAG neuropathy Granacki New Member Introductions 33 10-22-2014 02:20 PM
Nutrition help for neuropathy? daniella Peripheral Neuropathy 54 08-23-2011 07:24 PM
Neuropathy Harper Peripheral Neuropathy 35 09-05-2007 08:05 PM
SCS for neuropathy cathy911 Chronic Pain 2 07-24-2007 03:54 PM
Possible new neuropathy med? dahlek Peripheral Neuropathy 2 12-24-2006 02:12 PM


All times are GMT -5. The time now is 06:19 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

All posts copyright their original authors.

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.

Home