[tysondouglass]

Hello guys. I was just confirming that I am doing the right thing here.

It's so hard to tell because some days I feel fine and other days I feel horrible. I have requested a leave of absence due to medical problems. My grades will be as though I haven't taken any, and all of that.

Its so hard to leave all of my friends, and it feels as though I've failed.

I'm going to California w my aunt and uncle to work and rest. I plan on taking a few classes to keep myself with it.

This is all just another thing I'm stripped of, but to be in remission I think this is the only way. I cannot keep living the college lifestyle and be healthy with it, can I?


I just want to make sure this isn't the wrong thing to do. My parents are very angry as I'm not going home during this period.


Urg. I'm going to be so bored this year! Urgghhh

[Poetist]

Tyson,

Have you considered a compromise? Perhaps, you can stay home to avoid the college partying and go to school part-time.

What's the point in moving to another state and taking up a job, if what you really need is rest?

Won't California be there for you once you finished school?

[redtail]

Tyson, really only you know if you are doing the right thing, although as you are comming here and asking our opinions, I think it probably is, it sounds like you have made a decision but you just need to prove to yourself its correct!!!!
Just remember that you will still need to rest and recuperate to start impoving.
Take care, and keep us up to date as to how you are going
Kate

[suev]

While only you know what is the right thing for you, I do fully support your decision and feel that it is the correct choice at this stage of your MG.

The only thing I think you must pay particular attention to is the continuity of your care. With the various docs you have had in different parts of the country - - you become the continuity! (one step above patient advocacy in my opinion) There is nothing wrong with that at all - but it could become a challenge for you to determine the best course of action when your docs keep changing so fast!

Anyway, pls keep in touch and do maximize your chances for remission by taking great care of yourself during this hiatus.

Sue

[Annie59]

About your parents anger Tyson I just wanted to say that my youngest daughter is still angry but its not anger it is fear for me. I sure dont know for sure regarding your parents, but it took me a very painful year thinking both daughters had no understanding while what was going on was their process of grief and learning to understand. They've had to grieve. They've had to learn their mom was nolonger the strongest, hard working mom they knew. They lost their dad as I had mentioned to you when he was only 42. which I think makes thiis harder on them.

It sounds to me like you know what is best for you but it is a decision that is one of the hardest you have ever made. It is perhaps could be seen as selfish but I am telling you I wish I had the ability be to more so as it is what you need to do to get better before you push push into getting sicker. I kept going till one day I took a shower that was too hot and it all changed. The more stressed your body is I believe the more you may risk a big fall backwards that may be harder to recover from.

I think you are doing very good. Very good. It is just a very very painful and hard place to be in.
Annie59

Originally Posted by tysondouglass

Hello guys. I was just confirming that I am doing the right thing here.

It's so hard to tell because some days I feel fine and other days I feel horrible. I have requested a leave of absence due to medical problems. My grades will be as though I haven't taken any, and all of that.

Its so hard to leave all of my friends, and it feels as though I've failed.

I'm going to California w my aunt and uncle to work and rest. I plan on taking a few classes to keep myself with it.

This is all just another thing I'm stripped of, but to be in remission I think this is the only way. I cannot keep living the college lifestyle and be healthy with it, can I?


I just want to make sure this isn't the wrong thing to do. My parents are very angry as I'm not going home during this period.


Urg. I'm going to be so bored this year! Urgghhh

[tysondouglass]

Thank you all for your generous support. I decided to stay in school. I want to get my credits at least for this semester and maybe I will take a leave next semester. Im already half way done with these, even though the grades are horrible. Ive stopped partying, etc. so that my body can heal and I plan to just concentrate on solely my work.

Thanks again.

[Stellatum]

We wish you the best, Tyson. Annie59 is very wise to point out that a lot of different emotions get expressed as irrational anger.

Part of the problem, too, is misunderstandings of the disease. I'll never forget one friend who said, "Oh, myasthenia gravis! Yes, I know what that is. My mother thinks she has it." Me: "Really! What are her symptoms?" Friend: "Oh, when she exercises a lot, she feels tired." Yeah.

Yesterday I told my mother I'd made an appointment with the neurologist earlier than scheduled because my arms got so tired trying to eat soup the other night. Had to rest in between spoonfuls. She said, "That's a good way to explain the disease to people who don't get it: tell them how you had trouble lifting the soup spoon."

I told her light cooking isn't exactly my specialty (my heritage is Eastern European Jewish) but that I had really struggled to make a nice light soup, with broth and everything! OK, it was lentils. With potatoes. Still...

Tyson, you're so smart to set your priorities straight. We are all rooting for you.

Abby

[Poetist]

Yesterday I told my mother I'd made an appointment with the neurologist earlier than scheduled because my arms got so tired trying to eat soup the other night. Had to rest in between spoonfuls. She said, "That's a good way to explain the disease to people who don't get it: tell them how you had trouble lifting the soup spoon."

Stella, you triggered a memory in me. As a child, I had weak bouts just like that too tired to lift a finger. Parents thought it was odd -- even got called lazy a couple of times, but the spells went away as quickly as they came.

Flash forward, I don't have that extreme weakness anymore. If I exert myself, I feel extremely sleepy and would sleep for hours or I would need to sit down every few feet if I'm in the mall. That's a bad day for me.

Now, I know MG is rarely diagnosed in childhood, but I wonder if I had it all along. I'm still waiting on a definitive answer on whether or not I have it.

Next month, I will go to a MG clinic for an outside opinion, because my HMO cannot make up their mind. I'm afraid I might have nothing but a tumor growing on my thymus, if it is not MG.

[Stellatum]

Originally Posted by Poetist

Now, I know MG is rarely diagnosed in childhood, but I wonder if I had it all along. I'm still waiting on a definitive answer on whether or not I have it.
.

Poetist, what you say sets off a red flag in my head. Myasthenia gravis is caused by your antibodies attacking your muscle receptor cells so they can't bind to the chemical your nerves release to communicate with them. If they did a blood test, they're looking for those antibodies.

But there are other reasons your nerves and muscles might not be able to communicate. Some people are born with not enough muscle receptor cells. Some people don't produce enough of that chemical. These are inborn problems (congenital), but they sometimes don't start really affecting you until adulthood. They give you the same symptoms as myasthenia gravis, but there's no antibodies.

If you had symptoms as a child, you might have had myasthenia gravis back then. Or you might have one of these congenital myasthenic syndromes. If you have a congenital myasthenic syndrome, it won't show up on the blood test--and the drugs used to treat myasthenia gravis (the ones that suppress your immune systme like Prednisone, Imuran, and Cellcept) won't help you (but Mestinon will).

I asked my neuro yesterday how congenital myasthenia syndromes are diagnosed. He said it was difficult. He said there were people at Mayo, I think, who know how to do special muscle biopsies or something.

Anyway, tell your doctor about what you remembered. It might be part of the puzzle!

Abby

[Poetist]

Next month, I'm going to the MG Foundation of California, and I'm going to share this info. with them.

. If they did a blood test, they're looking for those antibodies.

They did, and it was negative. The only thing that suggested MG was the enlarged thymus with a 5.7 tissue growth, and a 10yr. old nerve conduction test and SFEMG that showed peripheral nerve weakness.

The odd thing is that I had another nerve conduction test (no SFEMG this time) and it showed no weakness, although I am just as weak on the right side as I was ten years ago. The doctor said that I could have nerve weakness, regardless of the test results, so. . .

Update: I went to look at my medical record online and I notice the "unsure" neuro-muscular specialist indicated a diagnosis of MG. Well, he actually typed "asthenia". What???

He told me in his office that he didn't think I had MG, but I noticed he kind of wrote that on my record on his follow-up.

I do know that late last month, he called me in to do a blood test for another disorder, but I can't find any record of it on my chart. I'm wondering did he have a change of heart and changed the chart????

So, I guess that means I have four doctors confirming MG. I'm still going to the MG Foundation of California to find out whether or not I should have my thymus removed, because I don't feel too comfortable with this neuro-muscular specialist's advice.