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.

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

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

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!

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.

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

I had to take a deep breath, Tyson, before I posted.

You are still working out? Seriously? Do you still not get it?

Sorry, but I don't understand. You have something else going on that either directly or indirectly affects your heart and breathing. Until you get that figured out, you need to back off on activity of all kinds. Give your body a chance to recover. When MG gets pushed to the limit, then it can take a much longer time than a couple of days to get better. After my crisis, it took over a month.

Congrats on getting into that school. I hope you can get better and finish college. It feels really good to have that kind of accomplishment.

It still seems like you are caught between "I have a disease" and "I don't want a disease." It's a hard reality to admit to let alone live with. If you don't just accept it, I'm afraid of how much worse you might get. What you described in school sounded like MG getting worse the more you did during the day. My pulse goes really high just rolling over in bed when my MG is bad. That's one of the first big warning signs (that you better stay in bed).

Is it peer pressure? Just hating what the disease does to your life? Denial?

Please remember that sitting still in a neuros office may not give a clear enough picture of how someone's MG is doing. And unless they give you a real workout during the clinical exam, they can't tell by "looking" if your MG is truly better or not. MG is kinetic. It changes from morning to night, from day to day. You could see a neuro on a Monday and be near a crisis by Friday.

I hope your docs can figure out what's going on. It would be great if you could feel better enough to get through four years or more of college. It was the best time I've ever had.

Annie

Congratulations on getting into your college Tyson!

Hi Tyson,

Congrats on getting into Goucher, thats awesome.


Kate

Annie,

My pulse gets high also when my MG is bad. I talked to my neuro about it and he said it has nothing to do with MG, that I should go to my general doctor to get it checked out. I know it is the MG, it is very obvious, it only happens when I push myself and this never happened to me before MG.
So I am going to go to my regular doctor and see what they say, although it is very unlikely they will see the high pulse, but at least I will have it documented by a doctor that I am reporting this symptom (I am thinking about future application for disability).

Thanks