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


advertisement
Reply
 
Thread Tools Display Modes
Old 08-06-2010, 11:55 PM #1
Mick2 Mick2 is offline
Junior Member
 
Join Date: Aug 2010
Posts: 8
10 yr Member
Mick2 Mick2 is offline
Junior Member
 
Join Date: Aug 2010
Posts: 8
10 yr Member
Confused More appreciation

I now have more appreciation for the discomfort many of you are going through.
I was golfing today with what has been normal for a couple weeks....poor focus, double vision, weakness etc. I've had to wait to focus before hitting a shot and have to putt with one eye closed. But today, after struggling through 12 holes, I found it impossible to hold my head up. Hovering over a shot, my neck muscles would start trembling, get sore and my head would flop down onto my chest.
I tried for a few more shots but got too painful. The walk to the car after quitting early was an exercise in willpower with trying to raise my head to see where I was walking.
I suppose my few years of relative "easy" MG is coming to an end. I can now relate a little more to some of your posts on this forum.
I'm not sure why but I thought I would share.
Mick2 is offline   Reply With QuoteReply With Quote

advertisement
Old 08-07-2010, 06:05 AM #2
suev suev is offline
Member
 
Join Date: Jun 2009
Location: Texas
Posts: 748
10 yr Member
suev suev is offline
Member
 
Join Date: Jun 2009
Location: Texas
Posts: 748
10 yr Member
Default

Hi Mick - welcome !!

I'm a golfer too and have had MG for 3 years - but only dx'd for 1. Sorry to hear about your difficulties on the course. How long have you had MG?

I am very interested in your story as I wonder about possible progression of symptoms over the coming years. Neuro says no way to tell - - but hearing with someone with first hand experience is always helpful.

Are you on meds? I only take Mestinon and am usually able to play 9 for sure, about 14 usually, and sometimes 18. I take 60 mg to start, 30mg more after #9 - and sometimes 30mg more around 16. Depends on the heat alot. (Used to have single digit handicap - -and now I have none...but at least I can still play a bit.)

Hope you are feeling better after some rest and air conditioning! Looking forward to your reply.

Sue
suev is offline   Reply With QuoteReply With Quote
Old 08-07-2010, 12:09 PM #3
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Default

My other symptoms are getting steadily worse, but my neck is much better! I think I read that neck symptoms tend to come and go, for no discernable reason. Here's hoping the weakness in your neck, at least, just goes away.

Abby
Stellatum is offline   Reply With QuoteReply With Quote
Old 08-07-2010, 07:35 PM #4
Mick2 Mick2 is offline
Junior Member
 
Join Date: Aug 2010
Posts: 8
10 yr Member
Mick2 Mick2 is offline
Junior Member
 
Join Date: Aug 2010
Posts: 8
10 yr Member
Grin

Hi Sue,

I am on mestinon 6x30 from 08:00 to 8:00 and then a 180 timespan pill for overnight. Sometimes I take an extra 30 on the course when I'm feeling weak but for the past week or so, the drug seems to have lost most of it's effectiveness. I have constant visions issues and weakness is much more pronounced....pushing golf cart, stairs, neck/ shoulder as mentioned before.

I hope to make it through 9 holes on Monday knowing I'll have the vision problems but maybe the neck will hold out.

I have an appointment with neuro in a couple weeks (he's on vacation) so might gain some insight then. Meanwhile, I'm playing with dosage a little but see no benefits as yet.

Abby,

Thanks for your feedback and hope you're right...it sure is a pain in the neck:
Mick2 is offline   Reply With QuoteReply With Quote
Old 08-07-2010, 10:38 PM #5
suev suev is offline
Member
 
Join Date: Jun 2009
Location: Texas
Posts: 748
10 yr Member
suev suev is offline
Member
 
Join Date: Jun 2009
Location: Texas
Posts: 748
10 yr Member
Default

Hey Mick,

Give serious thought to riding a cart whenever you play golf. There is no point in exerting yourself and risk a crisis - esp in summertime heat (wherever you live...it is hot this summer!). Take it easy on yourself til your strength comes back or til you see neuro.

A cart makes a huge difference and allows me to play longer.
Take care,
Sue
suev is offline   Reply With QuoteReply With Quote
Old 08-08-2010, 08:44 PM #6
Tbarney Tbarney is offline
Member
 
Join Date: May 2009
Location: Iowa
Posts: 163
10 yr Member
Tbarney Tbarney is offline
Member
 
Join Date: May 2009
Location: Iowa
Posts: 163
10 yr Member
Default

I quit playing golf after my thymectomy, but would like to start up again. I tried to hit a few balls at the range and it really hurt my chest when I made contact. Maybe I am just wimpy and maybe it would get better with time.

It makes me sad because right before I was diagnosed I just started playing a lot with my son who is now 15. I grew up playing everyday as a kid. I can ride along in the cart with him now, but sure wish I could play.

Now my daughter who is 11 wants to start, but I don't have the energy to take her out. It is too darn hot. My husband hates golf, so that is not an option.
Tbarney is offline   Reply With QuoteReply With Quote
Old 08-13-2010, 11:11 PM #7
Mick2 Mick2 is offline
Junior Member
 
Join Date: Aug 2010
Posts: 8
10 yr Member
Mick2 Mick2 is offline
Junior Member
 
Join Date: Aug 2010
Posts: 8
10 yr Member
Default

I'll consider myself lucky then. I did manage 18 holes this past Wednesday with the use of a cart. My vision was "off" the whole time so couldn't follow ball flight or putt very well. (looking left on a putt is impossible with the double vision)

I'm not sure how much longer I can do this as I seem to be sliding everyday. The mestinon might as well be candy for all the good it's doing. I barely got some dinner down tonight. Temp is going to 32 degrees for the next week which won't help either.

Oh well, enough whining...I'm booking more golf for Monday....I'm going down swinging.
Mick2 is offline   Reply With QuoteReply With Quote
Reply

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
Appreciation for ya'll Doodle bug7 Social Chat 1 11-07-2007 06:02 PM


All times are GMT -5. The time now is 02:00 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.