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


advertisement
Reply
 
Thread Tools Display Modes
Old 03-16-2010, 07:53 PM #1
tysondouglass's Avatar
tysondouglass tysondouglass is offline
Member
 
Join Date: Oct 2009
Posts: 474
10 yr Member
tysondouglass tysondouglass is offline
Member
tysondouglass's Avatar
 
Join Date: Oct 2009
Posts: 474
10 yr Member
Default Update

Hey guys, sorry i havent posted in a while..been so busy trying to catch up on homework...its so hard. I did get into GOUCHER! Its a college in Baltimore, great premed school, allowing to take classes at Johns Hopkins! So cool.

But finishing this year is so hard. I stayed up till only 12 last night trying to finish homework, and had to sleep in, in the morning to be able to function.

Its a hard balance.

Yet I believe my MG is doing great. But theres something else wrong, i know, as you all do aswell.

I have been doing very well, NO chest pains, few headaches, and rare high pulse. - Yet today, things didnt go so well...Im not sure if i took my meds at all...i cant remember, I know i got them out, but then couldnt find thm when i came home from school to get them..so i must have taken them. Anyway.

During spanish class, the peroid before i got to go home, it was getting hard to breathe, and talk without getting winded, my pulse was 124, sitting down, and just so weak...and this all lasted about an hour...im so puzzled to as what it could be.

I want them to put me on a heart monitor for outpatient, to see if they can capture it when im doing normal stuff...not laying in a bed.

But, i came home, took my mestinon...which doesnt seem to help that much, and rested for an hour. Then went to work out, and just am a little tired...so i dont think its my MG or id be in the hospital gasping for air..


Ive also had alot of chest pains today, which hasnt been the case for the past couple days.

But, I see my physician tomorrow at 1:45, and hopefully we can figure something out!

thanks for listening.
tysondouglass is offline   Reply With QuoteReply With Quote
Old 03-16-2010, 08:10 PM #2
Shari_W Shari_W is offline
Member
 
Join Date: Aug 2009
Posts: 241
10 yr Member
Shari_W Shari_W is offline
Member
 
Join Date: Aug 2009
Posts: 241
10 yr Member
Default

Hi Tyson ,
First of all Congrats on being accepted into GOUCHER!!!!!

I too am trying to decide what I want to do with my life since I am no longer working and on Disability. I am quite a bit older than you but my brain still works! I am thinking about taking a few college courses online because I didn't complete my degree when I went to college the first time, many moons ago. The field of Health and Natural Wellness interests me since I have changed my lifestyle and am seeing positive results with natural ways to help my body. Even if nothing comes out of it, at least I will gain more knowledge for my personal health. I am still using conventional medication and will continue to do so in addition to what I am doing naturally. Changing my diet has helped tremendously.

Enough about me. I am just curious as to how much working out you are doing and what it consist of? Does you doctor know about your workouts?
I am not saying that you should stop totally because I know excercise is very beneficial to the body as long you know your limits. I am just concerned about excersizing and your chest pain (discomfort)

Good Luck and I hope you can get some answers tomorrow. As always, I will keep you in my prayers.

Blessings,
Shari

Last edited by Shari_W; 03-16-2010 at 08:39 PM.
Shari_W is offline   Reply With QuoteReply With Quote
Old 03-16-2010, 09:24 PM #3
Nicknerd's Avatar
Nicknerd Nicknerd is offline
Member
 
Join Date: May 2009
Location: Toronto, Canada
Posts: 547
15 yr Member
Nicknerd Nicknerd is offline
Member
Nicknerd's Avatar
 
Join Date: May 2009
Location: Toronto, Canada
Posts: 547
15 yr Member
Default

Hey Tyson,

How many mgs of mestinon do you take at a time, and how often during the day?

Lately, since seeing a different neuro. for a second opinion, I take 60 mgs and then another 60mgs like an hour and a half later...I usually do this on my initial dose after awakening, and then resume the 60mgs every 3-hours. It works for me. I don't recommend you changing your dose without asking your doc. first, but the fact that you think you took it in the morning, and didn't take it at school at all, sounds like little mestinon in terms of tha severity of your sx. I know that everyone is different, though.

What happened during spanish class doesn't sound like something other than MG. MG affects your diaphragm, doesn't it? Your speech is somewhat affected now too? Whenever I have major troubles talking (especially when my speech is nasal), I get extremely winded and my heart rate goes up. When I was in the hospital, the stay after having surgery, I was hooked up to a heart thingy. I was talking to the neurologist, and I started having tachycardia (the machine started beeping really loudly), and I was doing the typical gasping thing while talking. This happens often during talking when I'm very weak. I personally dont think that it's my diaphragm, but some other muscle in the upper area of my chest that affects my breathing. It almost feels like my throat's collapsing.

Anywho, I"m not saying that nothing else is wrong, but the same thing happens to me when I'm feeling weak. Now that I am super vigilant with my mestinon, and have tweaked the dosage somewhat, I feel more in control and I haven't had to stay in the hospital since August. But, like I said, this doesn't mean that what's happening with you isn't something else, but it does sound very familiar to me.

I'm glad that you got into that school! I bet that you'll be a terrific doctor!!

Nicky
Nicknerd is offline   Reply With QuoteReply With Quote
Old 03-17-2010, 12:30 AM #4
DesertFlower's Avatar
DesertFlower DesertFlower is offline
Member
 
Join Date: Aug 2009
Location: Tucson, AZ
Posts: 466
10 yr Member
DesertFlower DesertFlower is offline
Member
DesertFlower's Avatar
 
Join Date: Aug 2009
Location: Tucson, AZ
Posts: 466
10 yr Member
Smile

Nicky & Tyson,

I am excited that both of you sound like you are doing better.

Tyson I am happy for you! I loved college and would love to go back, there is always more to learn. I wonder if I should go back to college and start a new career. That would be fun! I think that if you can study and get all your homework done (and it sounds like you are), while dealing with MG, you can do anything.

Hooray!
__________________

.
DesertFlower is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Nicknerd (03-17-2010)
Old 03-17-2010, 09:39 AM #5
Joanmarie63 Joanmarie63 is offline
Member
 
Join Date: Mar 2009
Location: Western North Carolina
Posts: 468
15 yr Member
Joanmarie63 Joanmarie63 is offline
Member
 
Join Date: Mar 2009
Location: Western North Carolina
Posts: 468
15 yr Member
Default

YEAH on college! A new adventure in your life so try to enjoy every second of it.

I know years ago when I would forget to take my meds I reacted the same way you did. So it could be that.

I know what you mean about the heart monitoring, they always take your vitals when you are at rest but not when you walk in and can hardly breath and your heart is in your throat...LOL

Let us know what the Dr. says and I was glad to see your post today, I was beginning to worry.
Joanmarie63 is offline   Reply With QuoteReply With Quote
Old 03-17-2010, 10:38 AM #6
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

Tyson, did your TSH come back OK? Have they ruled out Graves' disease? I know Graves' and MG often go together--evidently the antiobodies are similar.

Congratulations on getting accepted!!

Abby
Stellatum is offline   Reply With QuoteReply With Quote
Old 03-18-2010, 11:16 PM #7
tysondouglass's Avatar
tysondouglass tysondouglass is offline
Member
 
Join Date: Oct 2009
Posts: 474
10 yr Member
tysondouglass tysondouglass is offline
Member
tysondouglass's Avatar
 
Join Date: Oct 2009
Posts: 474
10 yr Member
Default

Shari- Thanks! Im also happy i got in. Exciting. Yet going back to school can always be a very positive experience!

But, yes my MG Doctor, and my physician both know about me excersizing, and BOTH APPROVE. My MG doctor. (Dr. Juel- From the Duke Myasthenia Clinic, says that Im doing GREAT mg wise and can excersize from his view. Yet im a little confused at why he says that cus at the end of the day its hard to wash my face. or brush my teeth. But oh well, im going to trust him! But, I did have a heart monitor on for the past two days again, trying to catch this thing.

Thanks for your concern!

Nicky- I only take 60 mgs, 3 times a day. Usually when i wake up before i eat, and then after lunch, then before dinner..
In reality, i would love for it to just be my MG, for it woudlnt have to be anything else...yet. This specialist thinks that It it something other than MG, because my heartbeat also goes irregular, skipping beats alot. So Im going to see a cardio the 14th at Duke and hopefully getting more answers.

Thanks for your concern aswell!

Desert Flower- Thank you very much! Yeah im trying...not getting all my homework done, it tires me out too much. yet Its fine.

Thanks joan, I hope to get into UNC aswell.
Like i said up above, i went to my physician and got her to do a chest xray, and then she put the heart monitor on again, so i had that on the past two days.

But, ill keep u guys updated!

Abby- Phew, this is getting exhausting But, they havent ruled it out yet, i will mention it to my doc again. Thanks.

Thanks rezmommy!

Annie- check your inbox.
tysondouglass is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DesertFlower (03-18-2010), Nicknerd (03-24-2010)
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
Another update tysondouglass Myasthenia Gravis 9 12-04-2009 12:02 PM
an update tysondouglass Myasthenia Gravis 8 11-30-2009 02:12 AM
HI....here's an update........ Roxie2007 Peripheral Neuropathy 9 04-12-2008 03:14 PM
A little update... Yorkiemom Peripheral Neuropathy 7 02-26-2007 07:03 PM
Update LizaJane Peripheral Neuropathy 10 02-16-2007 01:45 AM


All times are GMT -5. The time now is 07:03 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.