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


advertisement
Reply
 
Thread Tools Display Modes
Old 01-11-2017, 01:10 PM #1
wiscorner wiscorner is offline
Junior Member
 
Join Date: Jan 2017
Posts: 6
5 yr Member
wiscorner wiscorner is offline
Junior Member
 
Join Date: Jan 2017
Posts: 6
5 yr Member
Default new comer

Was officially diagnosed last year, however have had symptoms for many years. Have had a hard time walking any distance along with out of breath. When I got tired of always being the last one and it felt like I was walking in a vat of molasses I decided to see a nureologist. He did the usual exam took blood work. I also have had occular symptoms, ptosis, double vision. So although the blood tests were negative he started me on mestinon 60 mg daily. I thought I had found the cure- felt like normal. Naturally it didn't last. Currently on mestinon 180 once a day. Will be seeing him again as my arms are occasionally getting involved. Think I may need a little more mestinon. Oh, forgot to mention I am 71 yrs old. Female.
wiscorner is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
FREDH (01-11-2017)

advertisement
Old 01-11-2017, 07:51 PM #2
Snoel Snoel is offline
Junior Member
 
Join Date: Oct 2015
Posts: 78
8 yr Member
Snoel Snoel is offline
Junior Member
 
Join Date: Oct 2015
Posts: 78
8 yr Member
Default

Welcome a board, you will have a lot of good info and input, hopefully it will help you get and feel better...

I'm no Doctor but me having Mayasthnia now for 9 yrs now and been through some tough times I can recommend you on a few things like your Mestinon I would try taking it more frequent during daytime, try 30mg or half a 60mg pill every 4 hrs starting from time you get out of bed and see how you feel...Up as you get more active and your worse enemy is HEAT and humid heavy weather, don't take HOT bath or shower and STAY OUT of Hot Tubs. At bedtime I take Mestinon SR 180mg to get me through till morning, I try to get between 7 to 8hrs sleep.

I don't know were you live but myself being a Canuck I much prefer Winters cool/cold than our stupid HOT and humid mugy summer weather...I have to up my Mestinon by a lot when the going gets too HOT, even STRESS, emotion, lack of sleep will have a big affect on your symptoms, also do not overdue things learn to get help to get chores done... Please listen to your BODY!

You will get to know what affects you and you'll have to make lifestyle changes and adjustments.

One last thing please try to stay away from PREDISONE... Sometimes we have no choice, I've been off since June 2016 and now having major problems with withdrawal effects like severe muscle and joint pain symptoms...I'm now on Imuran as a immune surpressent which I've had good success and with very little side effects...so far and I also do IVIg and PlasmaPheresies.

But before you go ahead with any changes please speak to your Nuro/Specialist what works for one doesn't always work for other's...Everyone is different.

Good luck and keep us posted on your progress.
Snoel is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
FREDH (01-11-2017)
Old 01-11-2017, 09:50 PM #3
FREDH FREDH is offline
Member
 
Join Date: Jul 2012
Location: San Antonio, Tx
Posts: 140
10 yr Member
FREDH FREDH is offline
Member
 
Join Date: Jul 2012
Location: San Antonio, Tx
Posts: 140
10 yr Member
Smile

Hello Wisconer and welcome,
As usual I almost always agree with Snoel I think I would have to add 1 thing.
You do need to space out your Mestinon during the day. (with approval of your doctor of course).
Mestinon does not have a long life once you take it. If you take 1--180 timespan at 9:00 AM, it is probably gone by 5:00 PM, or sooner. You will not have any medicine in your system until the next AM.
I would ask my doctor about this.
Later
FREDH
FREDH is offline   Reply With QuoteReply With Quote
Old 01-14-2017, 12:44 AM #4
wiscorner wiscorner is offline
Junior Member
 
Join Date: Jan 2017
Posts: 6
5 yr Member
wiscorner wiscorner is offline
Junior Member
 
Join Date: Jan 2017
Posts: 6
5 yr Member
Default unusual event

Am new to the group. 71 yr old female originally dx with occular m.g. about 5 years ago.
Although had diff walking any distance for years and steps were almost impossible, I just put up with it until last year. Went to neurologist with problems of feeling like trying g to walk while in a vat of molassas. After traditional neuro exam was officially dx with myasthenia gravis. As time has moved on have been experiencing arm involvement. But biggest problem has been with breathing. Totally out of breath just going from room to room. Was put on mestinon extended 180 mg once daily. Originally was great but now lucky to have it help for 2 hrs. Had unusual event recently. Upon waking up, after a full night sleep, immediately noticed room was 'off kilter". Not actually dizzy but wrong. Got up to walk and almost fell over. Any walking resulted in leaning to left. Sat in kitchen waiting for it to pass. No pain
. No numbness. After 45 min with o ly slight improvement went to E.R. was worked up for rule out stroke or TIA. Very thing was normal. Felt kind of like an idiot. Has any one else experienced anything like this? I wondered if it was related tlm.g.
wiscorner is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
FREDH (01-15-2017)
Old 01-14-2017, 12:28 PM #5
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Help

If you are still feeling short of breath, go back in and have them evaluate your breathing!!! They should have done that in addition to a possible stroke. They might have looked for a pulmonary embolism as well.

Please go back in and have them more thoroughly check you out. Simply because they didn't find evidence of a TIA/stroke does not mean that nothing is wrong. You should not feel "stupid" about seeking out care when you have more serious symptoms. You might be nearing a MG crisis, which needs immediate care.

I hope you'll be okay!!!

Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ErinBear (01-14-2017), FREDH (01-15-2017)
Reply

Tags
blood, day, event, leaning, mestinon, symptoms, unusual, walk, walking

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
New comer family man Reflex Sympathetic Dystrophy (RSD and CRPS) 10 04-13-2014 08:13 AM
New comer suffering Severe Cervical Bilateral Foraminal Stenosis walterinpain New Member Introductions 4 11-17-2013 12:51 AM
New Comer LaMike New Member Introductions 8 12-01-2011 01:18 PM
Another new comer cgoyer New Member Introductions 3 04-11-2011 05:05 AM


All times are GMT -5. The time now is 08:44 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.