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


advertisement
Reply
 
Thread Tools Display Modes
Old 04-10-2021, 10:24 PM #11
Davidgonza Davidgonza is offline
New Member
 
Join Date: Mar 2011
Location: Puerto Rico
Posts: 5
10 yr Member
Davidgonza Davidgonza is offline
New Member
 
Join Date: Mar 2011
Location: Puerto Rico
Posts: 5
10 yr Member
Default

Hi. My symptoms started with droopy eyes and double vision after a minor forehead concussion playing with daughter when she was 2 years old. That was 17 years ago. At the time I visited several specialist and sud-specialist with no diagnosis (almost 2 years). After educating myself I asked a neurologist to prescribe Pyridostigmine (Mestinon) to see how my eyes would react. After couple of days my eyes were going back to almost normal. Since then I started the same medication and prednisone to control symptoms under MG experienced Neurologist. It started ocular MG and then became generalized after 4 years. I never tested positive for musk antibodies. I was diagnosed based on the symptoms; droopy eyes, double vision, difficulty swallowing, weakness throughout my whole body, shortness of breath, falling,... All those symptoms and severity would come and go depending level of physical and emotional stress, There are more things that I can say but will leave that for later as needed. Good luck!
Davidgonza is offline   Reply With QuoteReply With Quote

advertisement
Old 05-07-2021, 10:54 PM #12
Michael147 Michael147 is offline
Newly Joined
 
Join Date: Jan 2021
Location: reside in Kyneton, Victoria, Australia
Posts: 4
3 yr Member
Michael147 Michael147 is offline
Newly Joined
 
Join Date: Jan 2021
Location: reside in Kyneton, Victoria, Australia
Posts: 4
3 yr Member
Default

I have been on this site for some months but this is my first response to a request for advice - I first experienced double vision and drooping eyelids in August, 2020. I attended a specialist eye practicioner who was suspicious of my situation - he placed ice packs wrapped in tea towels on my eyes for 15 minutes - he had his assistant film it - when ice packs removed both eyes wide open - he prescribed Mestinon (weak dose) and told me if I had any further issues to attend thr Neurology Dept at a major hospital in the city (Melbourne, Aust). Within two days I underwent major loss of energy, so much so I thought I might be dying. After about three hours I came good and put off the Hospital. Two days later it happened again - I called an ambulance and went to the Royal Melbourne Hospital - the Emergency dept conducted the ice pack test again and filmed it for teaching purposes - I was admitted to Neurology and they spent four days testing me for everything - at the end of the four days they concluded the eye specialist was right though the confirming blood test result was not available for three weeks - apparently the only laboratory able to do the required test was in Brisbane - after three weeks the test confirmed the diagnosis - when I left the Hospital after four days I was on Mestinon and Prednisolone -they rung me a week later and asked if I was any better - I wasn't so they had me return to the Hospital for a further week when they did blood transfusions every days for the week - since then they have increased Mestinon to 420mg a day and Prednisolone to 50mg a day - the medication arrested all of the MG symptoms except it could't get my head up properly, about half way - its now May,2021 and rthey afe just beginning to reduce my prednisolone, now down to 20mg daily - my legs are in terrible pain but I am told that will improve as I'm getting off steroids - they are replacing the steroid with mycophenlate (2000 units per day) - apparently mycophenlate is used for surpression of the immune system with people undergoing organ transplant - I hope my story gives you an understanding of the process and what to expect - its no fun but my neurologist insists she will get me back to near normal within the next six months - I hope she is right but time will tell
Michael147 is offline   Reply With QuoteReply With Quote
Reply

Tags
choking, pcp, started, symptoms, test


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
Support....I am here to offer support. bizi Bipolar Disorder 50 03-31-2020 03:32 AM
New and need support Donna1018 Aneurysm 4 07-12-2012 10:14 AM
Need Support please! MetalMX Gluten Sensitivity / Celiac Disease 1 05-03-2011 02:51 PM
Thanks for the Support. rezmommy Myasthenia Gravis 13 11-30-2009 08:24 PM
Support those with ALS BobbyB ALS News & Research 0 06-10-2007 09:51 AM


All times are GMT -5. The time now is 06:44 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.