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


advertisement
Reply
 
Thread Tools Display Modes
Old 11-30-2008, 04:25 AM #21
spelbound spelbound is offline
Junior Member
 
Join Date: Nov 2008
Posts: 8
15 yr Member
spelbound spelbound is offline
Junior Member
 
Join Date: Nov 2008
Posts: 8
15 yr Member
Default

Quote:
Originally Posted by erinhermes View Post
Hello and welcome! You are going to love this site! Eveyone here is so friendly and caring!

This has truly been a blessing for me, cuz' b/4 I found this site, I was so scared all the time, but have found people that KNOW what I'm going through!

I still have the muscle problems - even though I'm on roids' - 20 mgs a day and mestinon (480 mgs a day)..........Before the roids, I couldn't even carry a gallon milk, and EVERYTHING was just too hard!!!!

When do you see your neuro? Are you on any meds? What tests have you taken? How are you feeling today?

If you need to talk, I'd love to hear from you!!!

Hang in there and do not overdo it!

Erin

I'm doing ok. Thanks for the welcome. In the UK you cant just go and see a neuro. You have to get a referal from your GP. My symptoms came on quite suddenly so at the minute my GP doesnt want to refer me. He hopes its a virus. But its not getting any better. First thing I noticed were widespread fasciculations. When this happens you fear ALS.

My GP has no idea what is going on and wants to give it time. I dont agree so Im pushing for a referral.

As for tests. Well I've had the usual stuff - liver, thyroid, white cell, kidneys, sugar, electro balances - all normal. I know something is wrong - I can feel it. As for what I have - no idea. People have suggested to me its MG because of the variability of how I feel and how I feel better after I rest. Have a look at my post and tell me what you think xxx
spelbound is offline   Reply With QuoteReply With Quote

advertisement
Old 11-30-2008, 04:47 AM #22
spelbound spelbound is offline
Junior Member
 
Join Date: Nov 2008
Posts: 8
15 yr Member
spelbound spelbound is offline
Junior Member
 
Join Date: Nov 2008
Posts: 8
15 yr Member
Default

Quote:
Originally Posted by neutro View Post
As Redtail put it:"It seems that our neuros test us differently around the world",
here is a test procedure which is fairly common in France and in Belgium.
I find it interesting because you can test yourself at home with the aid of a relative and because it is quantified, so it enables you to follow the evolution of MG.
I think it is particularly useful in case of generalized MG, as all muscles are tested.
If you have any difficulty with the translation or with the tests themselves, do not hesitate to ask clarification…
Maurice.


QUANTIFIED MUSCULAR SCORE FOR MYASTHENIA





Maximum total score = 100 points
Sorry I cut the quote to make it shorter...

It was very interesting, and on the face of it I come up quite low on this scoring sytem. BUT I had difficulty in every single area of the test. For example, putting my arms in front of me they start to ache after 10 seconds, after 25 they start to quiver, after 45 the muscles are possitively burning. How far should you push yourself?

I dont know how fast MG develps, but perhaps if I do have MG then its early stages for me.
spelbound is offline   Reply With QuoteReply With Quote
Old 12-06-2008, 11:08 AM #23
nancylee nancylee is offline
Junior Member
 
Join Date: Aug 2007
Location: Ballston Lake, NY
Posts: 34
15 yr Member
nancylee nancylee is offline
Junior Member
 
Join Date: Aug 2007
Location: Ballston Lake, NY
Posts: 34
15 yr Member
Default WOW- I thought it was just me!!!

It's been a while since I've been on to check in on everyone-sorry. When I saw this & read you replies, I could not believe it!!! I have had a few bouts of shakiness/ tremor-like experiences. At first, I thought it was a reaction to IVIG, then when I went off prednisone-but I never really got a definitive answer. Anyway, since I have not taken prednisone, I have not had that-thankfully. But it was a scary experience. I even had tremors on my tongue!!!! Anway, I'm sorry that you had that experience, but it is comforting to know that we are not alone.

Nancy Lee
nancylee is offline   Reply With QuoteReply With Quote
Old 12-07-2008, 03:09 PM #24
erinhermes's Avatar
erinhermes erinhermes is offline
Senior Member
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
erinhermes erinhermes is offline
Senior Member
erinhermes's Avatar
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
Default Hello again!

Hello Spelbound!

I am not a DR.,but our symptoms are quite similar. I also have had the red eye/conjuctivitis thing and my muscles do shake. I also experience numb limbs and the like. My muscles also get sore after activity and relax after I rest.

MG is such a tricky disease! For me it took a full blown crisis to be diagnosed - that should neer happen. When I was finally tested, I scored positive for every single aspect of MG - across the board. In fact, my surgeon told me he had never seen a more comprehensive diagnosis of MG - EVER - in the 20+ years he has been practicing. Not a good thing!

I think the waiting and worrying were the hardest for me. Certain members of my family said I was making it up or just lazy (in fact, they call it my "lazy bone" disease. Others said it was b/c I smoked, and others said I was depressed. The point I'm laboring to make is that you know your body! You know you are sick and need to get help!

Hang in there and let me know how you are!

Erin
Quote:
Originally Posted by spelbound View Post
Sorry I cut the quote to make it shorter...

It was very interesting, and on the face of it I come up quite low on this scoring sytem. BUT I had difficulty in every single area of the test. For example, putting my arms in front of me they start to ache after 10 seconds, after 25 they start to quiver, after 45 the muscles are possitively burning. How far should you push yourself?

I dont know how fast MG develps, but perhaps if I do have MG then its early stages for me.
__________________
Erin
.
erinhermes is offline   Reply With QuoteReply With Quote
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
Feel Really Weird right now - Shakiness, nausea, faintgness- withdrawl? Nathan1097 Bipolar Disorder 54 10-28-2006 12:03 PM
Lamictal and shakiness JAEV Children's Health 13 09-15-2006 09:25 PM


All times are GMT -5. The time now is 02:45 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.