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


advertisement
Reply
 
Thread Tools Display Modes
Old 09-02-2016, 09:16 PM #1
ttmmkk001 ttmmkk001 is offline
Junior Member
 
Join Date: Sep 2016
Posts: 27
5 yr Member
ttmmkk001 ttmmkk001 is offline
Junior Member
 
Join Date: Sep 2016
Posts: 27
5 yr Member
Default

Quote:
Originally Posted by Snoel View Post
Welcome aboard, this forum has very good advice and moral support it has helped me a lot...

I've been diagnosed back in 2008 I had a lot twitching in both eyes and left was drooping quite a bit but never had double vision after a while it went dormant and seemed to be under control, kept seeing my Neuro every 6 months and everything seemed fine, I refused to take any meds...

In Feb 2015 I thought I had a bad cold so I went to see my GP and as usual they prescribe you antibiotics, he knew I had Myasthenia and I wasn't aware to be very careful about prescribing certain antibiotics and ended up taking one that I wasn't suppose to and started me in a crisis!!! but as time went by I never suspected I was in a CRISIS...as time kept on going by I was getting worse so he kept giving other types of antibiotics... It got so bad I couldn't speak anymore nor eat or swallow, had a hard time holding up my head and very soar neck and started having a hard time breathing!!!

In mid April it got so bad I could barely breath, eat or swallow all I was eating is jello I couldn't drink water without choking I started losing weight...my breathing got so bad that is when I decided to admit myself to ER, my wife had to drive me in...I couldn't speak anymore and barely breath she had to do all the talking for me nor could I stand up she had to wheelchair me in...I stayed in the hospital for 8weeks and was off work for 10 months, I'm back to work now part time, I'm getting better weekly.

I'm not trying to scare you but don't do the same error I did...don't take this lightly and tell yourself it'll be OK! Get yourself a good Neuro and listen to him or her, get a list of MEDS to avoid taking and make sure your GP is up to par with your condition and take it day by day...

I'm now stable and have gained back my weight, strenght and eating is better than before being ill...I'm still medicated and doing a plasma exchange weekly.

I must say that I'm feeling as good as before, I still have some facial numbness and speach slur when I get tired or push myself a little to much, you have to reprogram yourself and change your habits and life style...in other words CHILL, LOTS of rest will make you feel a lot better.

Don't worry and listen to your body you'll be fine, I wish you all the best, don't let my story scare you theres no 2 cases the same, just don't do what I did and tell yourself I'll be OK and wait to the point that your over your head deep in a crisis, now that I got to know my body I listen to it!!!

I wish all the best
Thanks for the reply!
you were diagnosed in 2008, and 7 years laters you have genralized symptoms?
All this time i thought if one can get through 5 years without generalized symptoms, then it is unlikely to generalize.
Now i am scare! I have thinning bone. I probably cannot handle prednisone.
ttmmkk001 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (09-04-2016)
Old 09-03-2016, 07:02 AM #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

No one has the same symptoms, Doctors think what triggered my case into a generalized Myasthenia is the antibiotics I took that threw my immune system out of whack...

I was on the same page as you as far as being diagnosed as Ocular after all this time had gone by that's why just be careful as for what meds you take and don't overdue things, I was working 60 plus hours a week and living the life for over 25 years and I guess it caught up with me.
Snoel is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (09-04-2016), ttmmkk001 (09-04-2016)
Old 09-03-2016, 07:11 PM #3
Marijke Marijke is offline
New Member
 
Join Date: Aug 2016
Posts: 3
5 yr Member
Marijke Marijke is offline
New Member
 
Join Date: Aug 2016
Posts: 3
5 yr Member
Default

Some stories you read here will scare the you know what out of you, don't read all of them. Not all MG is the same and you are very likely to have a mild form of the disease.
Marijke is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (09-04-2016), ttmmkk001 (09-04-2016)
Reply

Tags
doctor, double, drooping, eye, vision


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 here (just diagnosed with SFN) Combo New Member Introductions 3 01-24-2015 06:51 PM
diagnosed with RSD but don't believe it abbeyn93 Reflex Sympathetic Dystrophy (RSD and CRPS) 14 01-11-2013 09:20 PM
New here just diagnosed iomjax Spinal Disorders & Back Pain 5 12-14-2012 10:37 AM
I am diagnosed!!!!!!!!!!! Stellatum Myasthenia Gravis 16 12-09-2010 05:09 AM
Diagnosed with RSD HouseLite New Member Introductions 9 01-19-2009 08:16 AM


All times are GMT -5. The time now is 04:45 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.