Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 02-26-2022, 11:59 AM #1
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Default Doctor taking away Mestinon!!

So this will be my job for the coming months, finding a way to keep my Mestinon. This drug is more of a life line than ever!! I went online this morn to update what I know about my neurologist here at home. So two things. She will take Mestinon away at end of 3 months given she is already distorting symptoms and the facts on me to fit her needs not mine. 2nd my local original pulmonologist is the only local doc that may be able to get her to at least give me more time. I estimate 6 months to at least get to Mayo neuro and his team so I can get prescriptions thru him. My youngest daughter does this. Where my neurologist is denied she has Epilepsy and sent off cold turkey off seizure meds. She was seen by top Seizure doc at Mayo who diagnosed her unique Seizure issue and does her meds. 3 years ago my Cardiologist said I do not have cardiac issues I have severe Myasthenia Gravis that needs bigger treatment!! But she said you need a better neurologist at Mayo. Sculptor 44
Sculptor44 is offline   Reply With QuoteReply With Quote

advertisement
Old 02-27-2022, 11:17 PM #2
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Default

Talked to my daughter today and she is firm in not believing my neurologist would drop my Mestinon in 3 months. She said it would be cruel and awful. She said she needs a direct statement from her nurse or her. She said she wanted a letter but I told her why that is A very bad idea. I have 2 other doctors there that are more Senior including my pulmonologist.. I am going to call my new helper tomorrow to discuss situation. I will try to meet with her soon to see if she has some ideas. I recalled in 2008 I lost my job. Because they weren’t willing to consider being more creative and consider my quality of life. They just patted me on my back when I was to be discharged and said oh well you don’t need to work. And no I am not wealthy so that really was weird. I have lost so many things over the years because of their ‘so what’ attitude. Sculptor 44
Sculptor44 is offline   Reply With QuoteReply With Quote
Old 03-13-2022, 06:52 PM #3
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Default

Bit of strange news. My pharmacist talked to Neurology under guise of how difficult it is now to get Mestinon consistently. She ended up getting a new prescription for a full year !! Without big questions she fixed things assuring my Mestinon. One problem down several more to go. I am much in need of Sun to go out in to get strength up. I am pretty run down. But grateful for the warmer week this coming week. Sculptor 44
Sculptor44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Lara (03-15-2022)
Reply

Tags
mayo, mestinon, months, neurologist, seizure

Thread Tools
Display Modes

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
Can I take a multivitamin while taking Mestinon? levisanz Myasthenia Gravis 0 08-30-2019 08:21 AM
Newbie taking Mestinon jana Myasthenia Gravis 4 03-20-2014 10:20 AM
Taking Mestinon joefnh Myasthenia Gravis 4 07-20-2013 09:09 PM
taking mestinon mimc Myasthenia Gravis 10 05-29-2013 08:15 PM
Pain in mid back when taking mestinon cherryvaliant Myasthenia Gravis 4 11-10-2010 09:44 PM


All times are GMT -5. The time now is 12:15 PM.

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.