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

Reply
 
Thread Tools Display Modes
Old 11-11-2012, 03:34 PM #21
hajile99 hajile99 is offline
Junior Member
 
Join Date: Aug 2012
Location: Las Vegas, Nevada
Posts: 70
10 yr Member
hajile99 hajile99 is offline
Junior Member
 
Join Date: Aug 2012
Location: Las Vegas, Nevada
Posts: 70
10 yr Member
Default

Quote:
Originally Posted by rogerm213 View Post
Glad to hear the race went well Adam. As for jumping out of a plane I think I will pass on that one for now!
Lol! Me too! I'll keep my feet firmly planted on the ground!
hajile99 is offline   Reply With QuoteReply With Quote
Old 11-11-2012, 03:35 PM #22
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Default

Quote:
Originally Posted by SoftTalker View Post
I sincerely hope you will soon be able to find the doctor that is the best for you and your health needs. I am very grateful for my current neuro - and - I do believe that he is still learning about MG via verfiable medical information and my "subjective updates" regarding my health/life with myasthenia gravis. My neuro is a "generalist" neurologist (does not assert to be a specialist in any neurological area).

Before I became this doctor's patient, I was seeing a neurologist who lists MG as one of his "specialties". His rigid approach and expectations from his medical treatment was (to me) at times, perplexing. Upon leaving an appointment one day I was approached by another patient who expressed this same observation. An MG crisis (while under this specialist's care) and subsequent hospitalizaton in a hospital - which he did not have attending privileges to - is what generated my transition from one neurologist to another.

Hang in there, when the time is right, I believe you will find the right physician.
Oh! A surprise message of support just when I needed it most but least expected it! THANKS SoftTalker Sue

Thanks also for sharing your experiences with docs - Sounds like the second doc needs a class set of those books you mentioned about in the reading thread!
Anacrusis is offline   Reply With QuoteReply With Quote
Old 11-12-2012, 09:13 AM #23
elinora's Avatar
elinora elinora is offline
Junior Member
 
Join Date: Oct 2012
Location: Minnesota, US
Posts: 13
10 yr Member
elinora elinora is offline
Junior Member
elinora's Avatar
 
Join Date: Oct 2012
Location: Minnesota, US
Posts: 13
10 yr Member
Default

Quote:
Originally Posted by SoftTalker View Post
Originally Posted by elinora

......it is the physician's responsibility to adjust his or her definition of normal health according to each patient

BRAVO elinora - to me, this is the sign of a good physician. I just don't know how many of these type of doctors are out there.


Originally Posted by Anacrusis

Hi elinora...thatīs a good point. In my own case it feels like that is almost impossible - But Iīm still working on finding one who does exactly that .....Anacrusis



Anacrusis

I sincerely hope you will soon be able to find the doctor that is the best for you and your health needs. I am very grateful for my current neuro - and - I do believe that he is still learning about MG via verfiable medical information and my "subjective updates" regarding my health/life with myasthenia gravis. My neuro is a "generalist" neurologist (does not assert to be a specialist in any neurological area).

Before I became this doctor's patient, I was seeing a neurologist who lists MG as one of his "specialties". His rigid approach and expectations from his medical treatment was (to me) at times, perplexing. Upon leaving an appointment one day I was approached by another patient who expressed this same observation. An MG crisis (while under this specialist's care) and subsequent hospitalizaton in a hospital - which he did not have attending privileges to - is what generated my transition from one neurologist to another.

Hang in there, when the time is right, I believe you will find the right physician.
Thanks! I'm trying. I hope I'm answering correctly here. It's new and confusing.
elinora is offline   Reply With QuoteReply With Quote
Old 11-12-2012, 12:40 PM #24
SoftTalker SoftTalker is offline
Junior Member
 
Join Date: Oct 2012
Posts: 83
10 yr Member
SoftTalker SoftTalker is offline
Junior Member
 
Join Date: Oct 2012
Posts: 83
10 yr Member
Default

Quote:
Originally Posted by elinora View Post
Thanks! I'm trying. I hope I'm answering correctly here. It's new and confusing.

You are doing great elinora.

Welcome to the "Group".

SoftTalker Sue
SoftTalker is offline   Reply With QuoteReply With Quote
Old 11-13-2012, 07:41 AM #25
rogerm213's Avatar
rogerm213 rogerm213 is offline
Junior Member
 
Join Date: Oct 2012
Location: Maine
Posts: 45
10 yr Member
rogerm213 rogerm213 is offline
Junior Member
rogerm213's Avatar
 
Join Date: Oct 2012
Location: Maine
Posts: 45
10 yr Member
Default

I have done loads of thinking on all of this and have decided after last nights 2 mile run (which turned into more walking than running) that I am going to defer my January marathon at Disney and instead put the credit for the entry fee toward the Disneyland Half Marathon in September. While I am seeing progress I have to think more long term and have to accept that progress will be slow in coming. Being stubborn and impatient will likely only lead me down a road to failure and risk undoing the progress I have made.

I apologize if I came off as a bit of a jerk here. My long term goal is still to get back to life as it was before MG and I think in time I can do that.

I will still make the trip to Disney in January as a spectator to cheer on my wife and daughter and spend time with all the friends that I have met through running over the years. There will be other races but first I need to try and heal at a slow and hopefully steady pace.

Thanks for all your advice. You all have helped me learn so much and it has been great to go to the Docs with knowledge in advance of my appointments.
rogerm213 is offline   Reply With QuoteReply With Quote
Old 11-13-2012, 07:57 AM #26
southblues's Avatar
southblues southblues is offline
Member
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
southblues southblues is offline
Member
southblues's Avatar
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
Default

You were not being a jerk. This is a really frustrating thing to be going through. We are in the same boat. I feel like my life is being stolen by this thing and I believe that the rest of us do as well. The treatments working to help us get our lives back.
__________________
Celeste
southblues is offline   Reply With QuoteReply With Quote
Old 11-13-2012, 08:05 AM #27
southblues's Avatar
southblues southblues is offline
Member
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
southblues southblues is offline
Member
southblues's Avatar
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
Default

I was good at taking it slow on Sunday and Monday. Well, sort of.

Saturday I sang and played a gig. I was the lead singer. I put a tremendous effort out and it went great. I was able to sing well. I sat on a stool rather than standing. The audience was receptive and enthusiastic. I was able to present several of my original songs as well as a few standards. I even had a nice chat with several people after the show.

I was glad that my husband drove me because on the way home, I ran out of gas. My tongue was paralyzed and I couldn't talk. If I had been pulled over, I would have been arrested for drunk driving. Then it because difficult to breath. I tried to relax and concentrate on breathing and it got easier in a few minutes.

By the time we got home I was a lot better. (It was an hour drive.) I have been a bit wobbly in my gait and my ptosis has been bad since, but I seem to be feeling ok this morning. I am going off to work here in a bit.

"You pays your money and you takes your chances."
__________________
Celeste
southblues is offline   Reply With QuoteReply With Quote
Old 11-13-2012, 01:18 PM #28
Quandry's Avatar
Quandry Quandry is offline
Member
 
Join Date: Nov 2012
Location: Arizona
Posts: 131
10 yr Member
Quandry Quandry is offline
Member
Quandry's Avatar
 
Join Date: Nov 2012
Location: Arizona
Posts: 131
10 yr Member
Default

Quote:
Originally Posted by southblues View Post
I was good at taking it slow on Sunday and Monday. Well, sort of.

Saturday I sang and played a gig. I was the lead singer. I put a tremendous effort out and it went great. I was able to sing well. I sat on a stool rather than standing. The audience was receptive and enthusiastic. I was able to present several of my original songs as well as a few standards. I even had a nice chat with several people after the show.

I was glad that my husband drove me because on the way home, I ran out of gas. My tongue was paralyzed and I couldn't talk. If I had been pulled over, I would have been arrested for drunk driving. Then it because difficult to breath. I tried to relax and concentrate on breathing and it got easier in a few minutes.

By the time we got home I was a lot better. (It was an hour drive.) I have been a bit wobbly in my gait and my ptosis has been bad since, but I seem to be feeling ok this morning. I am going off to work here in a bit.

"You pays your money and you takes your chances."
I can really relate to this because I too used to sing. I can't sing anymore and it makes me sad. I can't play guitar anymore either. I want to soooo much, but anytime I sing I can't breathe. I used to have a very powerful voice and now there is no ability to even control where the notes go without a lot of effort. Once upon a time I was a music major in college and even had a once in a life time opportunity to sing in the 1000 voice choir at the 1984 Olympic Open Ceremonies. I would have continued into a music career but circumstances halted me, and now that I'm able to pursue something my body can't.

I've tried to find another way to use my creative abilities so later in life I became an art major with an emphasis in painting, but by the time I graduated the economy tanked and I have a bunch of abstract paintings that I can't sell, especially in Arizona where Southwestern style prevails. I haven't painted in a while because I'm just too tired and I feel it's pointless to continue in this economy.

Now, I've been trying to write a sci-fi/fantasy novel, and I'm about a third of the way done, but my mind is very dull lately. I try to write bits of the story here and there, but my memory of details are often obscured. I've made a calender of events in the story so that I don't get too far off track, and I'm writing bits out of sequence and will piece them together later.

It's like I'm evolving all the time; searching for a niche that my body can handle.
Quandry is offline   Reply With QuoteReply With Quote
Old 11-13-2012, 06:48 PM #29
elinora's Avatar
elinora elinora is offline
Junior Member
 
Join Date: Oct 2012
Location: Minnesota, US
Posts: 13
10 yr Member
elinora elinora is offline
Junior Member
elinora's Avatar
 
Join Date: Oct 2012
Location: Minnesota, US
Posts: 13
10 yr Member
Default

It's really difficult, and you had to sort through things in your own way. One reads a lot of information and draws up plans in one's mind based on that info, but then one finds out how little MG concerns itself with plans. I don't know one runner who would do well with dealing with this. I am not. Have hope, though. I was unable to run a mile this summer, but now on 40 mg of prednisone, running is coming back. I have done two long runs, albeit at an excruciatingly slow pace. Don't give up!

Quote:
Originally Posted by rogerm213 View Post
I have done loads of thinking on all of this and have decided after last nights 2 mile run (which turned into more walking than running) that I am going to defer my January marathon at Disney and instead put the credit for the entry fee toward the Disneyland Half Marathon in September. While I am seeing progress I have to think more long term and have to accept that progress will be slow in coming. Being stubborn and impatient will likely only lead me down a road to failure and risk undoing the progress I have made.

I apologize if I came off as a bit of a jerk here. My long term goal is still to get back to life as it was before MG and I think in time I can do that.

I will still make the trip to Disney in January as a spectator to cheer on my wife and daughter and spend time with all the friends that I have met through running over the years. There will be other races but first I need to try and heal at a slow and hopefully steady pace.

Thanks for all your advice. You all have helped me learn so much and it has been great to go to the Docs with knowledge in advance of my appointments.
elinora is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
rogerm213 (11-14-2012)
Reply


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 just learning julie g Trigeminal Neuralgia 3 02-10-2010 11:25 PM
Look what I'm learning befuddled2 Creative Corner 0 11-14-2009 04:42 PM
learning iceteezz New Member Introductions 6 08-05-2009 09:06 PM
learning what is possible Alan53 Myasthenia Gravis 1 01-12-2009 02:02 PM


All times are GMT -5. The time now is 09:06 AM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 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.