Tyson,
Hope you are feeling a little better. I think we all go thru the drudge of feeling like this disease is a never ending battle. Just remember that we are here for you and that you always have a group here to support you with whatever you are going thru. I know that I need this group, as I get down and have to come on here and vent also. Just be thankful for such caring friends that are always here for you! God Bless You and even though this is our first communication, I have been keeping you in my prayers for quite some time now. Take care and keep in touch. If i can help you in any way, feel free to message me and I will try.
God Bless,
Simon

Redtail- Im glad your resting to the best of your ability, when i can learn to space my resting out i think ill become more at peace with this disease, yet at 17 its pretty hard trying to keep with my friends and all that, and i know i cant.
I hope your new years went well, and you didnt get too tired..


Simon- Thanks alot, i know this place is awesome, and thank you for keeping me in your prayers, that means alot even having not talked to you before. I hope your doing well.

Tyson,

After I wrote my post I thought, man being 17 and haveing mg sucks, I mean REALLY SUCKS. It was bad enough being 30, having decided really what I was going to do with my life, I had just started a vet nurse traineeship, was going to start campdrafting with my horse, yep life was looking sweet. Then bang everything went haywire.
So I can't imagine what its like for you, well maybe a little. Tyson, I hate that you are only 17 and have to deal with this disease, it more than sucks!!
Thinking of you
Kate

Kate,

I dont want you to feel bad for me at all, I hope thats not what you are thinking. But I appreciate the concern. I hate this disease, its one of the worst i feel like a teenager like me could get. For im so active and everything, and it just disables me to do so much. I cant have a job, I cant go out with friends when i want, etc. But its okay, cause i can deal with it for the most part...well not somtimes But thats what my therapist is for i suppose.

Even at 30 its really hard! Are you still in training to be a vet nurse? Or did you have to stop? Do you have bad MG? Not that all MG isnt bad, yet bad symptoms?

Hope your doing well.

Hi Tyson,

no I don't feel bad, its just 17 is meant to be the time of your life for going out exploring life, doing fun exciting stuff, ie going out with your mates, in your car!!!

No not in training anymore, don't work either, as having mg is enough for me to cope with at most times.

Iam doing well thanks, I'm home from my sisters, had a great time.

How are you doing??

Im sorry you cant work anymore, i hope that doesnt happen to me, i want to be an anesthiologist, and this better not keep me from my dreams.

It must really suck to have that happen and i hope they find a cure for it soon so you can go back to work and we can all enjoy normals lives once again...it seems like its been forever since ive been normal.

Do you ever get very frustrated when other people complain about having the flu or something...or even a cold, theyre like, OMG THIS SUCKS, SO BAD, ITS THE WORST THING OF MY LIFE.

People like that frustrate me so much, and i call them out on it. I guess they just dont have the experience we do.

Im okay. Its still really hard to wash my hair. my elbow are gets so tired on both sides, today my eye is all the way closed, and my left elbow area is getting very fatigued while typing.

Im going to go to bed early tonight.

I hope your doing well kate.

be well.

Hi Tyson,

I have now had mg for 7 years, and I've surrounded myself with people who understand, Iam very lucky to have a caring family, so they very rarely complain about their illnesses.

I find that when I'm having trouble washing my hair, I use my shower chair, its sooooo nice being able to sit down in the shower, not having to concentrate on standing, not slipping etc etc. I also find hanging my head between my knees helps, as you don't have to hold your arms up as much. I had a great neuro nurse and physio to give me ideas about making life a little easier, although this would have been nice early on, I only started seeing them a couple of years after diagnosis.

Iam paying for a exciting weekend, but I don't mind a couple of resting days, cos I really did enjoy myself,
Hope you are doing ok
take care

7 years. I cant imagine. Im glad that your family is so supportive of it, it really does help. I live w my aunt and uncle, and they have four kids and their own problems, so its really hard to get alot of support, and with MG you need support. Also at school its really hard, but they are pretty good about it, when im tired and all that.

Yeah there is a seat in my shower, and I use that when I get too tired. It does do wonders.

I just want to be the jock again! I know ive stated this so many times. its just the biggest stressor for me. Its the only way to let out steam for me, and its gone. I dont wanna go back into the hospital, i dont want to over do it, but i used to be the captain of two sports. And going from that, to not being able to, it kills me. I dont understand.

Im glad your weekend went well, just get some rest.

Im OK. Nothing more nothing less. It just sucks, and im ready for answers. Its been a month since ive been on pred. nothings happening.


hope your well.

Hi Tyson,

I'm in the same boat as you...I actually had no idea that you had a thymoma, and this could be why it's taking a while for you to get better. It also sorta explains why your symptoms got a bit worse after the surgery. For some reason that happens sometimes when there's a thymoma.

When I had my surgery, I also had to be re-hospitalized for an exacerbation. I met a nurse at the hospital who also had MG due to a thymoma. She had all the same symptoms (bulbar) as me, except she also had ptosis (I don't have this symptom).

Anyway, the year prior, she had her thymus/thymoma removed, and also had to be re-hospitalized two weeks after the surgery, just like us. Our neurologist (we have the same one) started her on Imuran, and one year later, yer symptoms were gone and she was working again.

So there IS hope. I know that things seem rough right now. I'm supposed to be starting Imuran too, but I'm a bit apprehensive. I came across a lady on this site who says that she knows someone who had resistant MG, also with bulbar symptoms, and Imuran helped her immensely. It isn't uncommon for MGers to take a strong immunosuppresant + prednisone + mestinon.

I know it sucks to take so many meds., but maybe you can ask the doc. about this. I also suspect that because you're young, kinda like me, although I'm older (26), your immune system might be 'stronger' than average, and this might be why it's taking a while for the prednisone to kick in. My neurologist actually said that my immune system is probably very strong, but maybe she was just trying to explain things to me in terms I'd understand.

The steroids didn't really start to work for a couple of months for me, and plus I had to take 80mgs. So you could always wait it out for a bit longer, but you could also bring up the possibility of taking another immunosuppresant in the future if things don't improve soon. I don't recommend taking a higher dose of steroids just because the side-effects are brutal, as you know. Adding another drug might be the best choice.

Good luck and sorry things aren't getting better faster. I know the frustration.

BTW, once something starts working well, you don't have to be on it forever. Your receptors might just need a good rest, some time to repair, as Juanita had said in another thread. When that happens, you could try getting off the pills and enjoy some healthy times without meds. That would be a truly happy day!

ttys!
Nicky

I hear ya kid, and I couldnt agree more.
this all sucks, and IM sorry such a young person like you has to suffer with the same disease an old fart like me has.
I can only offer you one tiny bit of advice, stay focused on everything else in your life that is important and dear to you, its something I try to do, I dont give in and I dont let this crap disease be the center of my life.