Update
 

Hey guys, thought I would give you an update on me.

My symptoms are about the same, yet Im feeling a grave weakness in my right bicep, i cant even use that arm to wash my hair in the shower sometimes because they get so tired.

My eye is still pretty bad, the eyelid itself sometimes closes when im really tired. yet the actual eyeball is lazy aswell due to it. Do any of you all have that symptom?

Breathing is the same, and chewing is a little more hard. Yet Im dealing with it.


My doctor said i do not need a cardiologist or anything like that, she thinks im fine. Nor a pulmonologist. Im still on 60mgs a day, and he wants me to be on that for a month then we are going to put it down a little bit.

I just dont really understand why the pred. takes so long to work..I thought it was quick.


But I hope you all are doing well.

Well, Tyson, then how do your docs explain the lovely reaction during plasmapheresis? Just the Accutane making your blood thick?! Have they even done a Pro-Time test on you (shows the thickness/clotting ability of your blood)?

Well, I am still sticking to my belief that ALL people with MG need a pulmonologist. A neurologist is not a pulmonologist and vice versa. You can't tell by looking how your breathing is doing! :eek: If you can get a baseline reading then when they recheck, they can know if you are worse or not. Trends in tests are as important as absolute numbers!

You are still having signs of MG on the edge. I would take it easy if you can. Oh, heck, even if you can't. ;)

I think you are doing incredibly well for having this thrown at you at your young age. Pat yourself on the back for being so grown up about it all. Oh, geez, don't mean to sound parental again - just that some of us who are lots older even have a devil of a time dealing with it.

Prednisone is weird. And it could be that you are having too much or too little. Does the Mestinon make you better or worse? Does rest make you better or worse? You kind of have to pay attention to those changes so you can tell your neuro if you think you are better or worse. It's a hard disease to get used to.

Hang in there. Watch some TV - lots of games on this weekend! ;)

Annie

Annie, they dont have any clue why I had that horrible reaction to the plasmapheresis. I am assuming it is because my body was so tired and couldnt handle anything too extensive. Though im not sure. They have not done a Pro-time test.

I believe your right with the pulmonologist aspect, yet i dont know how to go about getting one.

What do you mean you still think im on edge?

Thanks, it does take alot to come to somewhat of an agreement with this disease, and its really hard. Yet I think im finding the balance.

Thanks annie.

Hang in there Tyson. I'm still praying for you my friend! Enjoy the football and relax!
Simon

Well, your right bicep doesn't like you taking a shower, which means you may be right-handed and using that arm more or are showing signs of getting worse again. The chewing being a little more hard could be due to talking - have you been talking a lot?

I've noticed a difference between what neurologists tell men versus what they often tell women. They tell men that with drugs like Pred, they should have a normal life. With women, they simply say that their symptoms should improve but not that they would have a normal life. There seems to be an importance placed on getting men back to "normal" and as soon as possible. It's a very odd reality I've seen over and over again when doctors have talked about men who have MG.

Even with drugs, you can have a crisis. Drugs don't get rid of MG, they make the symptoms get better. And symptoms can always get worse if you do too much (like having a "normal" life). And so if someone thinks they should be able to do what they did before, they can get into MG trouble.;)

I'm not saying that's how it is with you but thought I'd throw that out there. Think of your muscle energy as money, use too much of it and you go broke. After you drive, your right leg may feel weaker and not just for an hour but a couple days later. There's an odd cumulative effect with MG where after you use a muscle group (like talking/chewing muscles), they can get even worse a day or two later.

So maybe be more aware of what you do every day and see if it effects you in the next day or two.

Do you have an internist/primary care physician? They will often recommend a pulmonologist for you. I have the kind of insurance where I don't need a referral, so I found one on my own after checking/asking around. I'm sure UNC has some good ones. Their pulm. techs are really good.

I hope you do NOT get worse! I hope you stay well and HAPPY. It sucks not to do what your friends can do but then maybe they can do what YOU can do with you. :hug: True friends adapt to someone with a disease and gladly.

Annie

Hi Tyson,

Yes I had huge problems washing my hair, I even chopped it all off, as it was easier to care for. Chewing was often a problem for me, I use to have a glass of milk for dinner, because I couldn't chew, I sometimes still have problems and just eat easy to eat meals.

Our neurologists see us for, if we are lucky about 10-15 minutes either every few months or weeks, depending on your neuro. I see mine every 4 months, after 7 years. He makes me do the chicken dance walk 5 metres, yes 5!!!! and then says I'm doing well. Weeeeelllllllll I think you are seeing me after I've been sitting for 15 minutes and resting up, not on a normal day.......its frustrating, but the way things are. One day I might just mention this, and see what he says, unfortunately he doesn't understand my weird sense of humour. He then asks if I've been doing any work, I just smile and say no not up to it yet. He doesn't seem to understand that just getting up in the morning is work enough for me.
I hope things keep on a even keel for you,
take care and don't go doing too much
Kate

my case I can only explain mine
 

12th october diagnosed with right eye droop and could not dry my hair
above my head,
pressure on chest unable to breathe.

read my other posts.
Have decided neuro has overdosed me maybe to force mg into remission.
However the side effectshave been worse than the initial problems.
Therefore without neuro involvrment I have reduced from 60mg to 5mg today of presdiscone.
all weakness has gone
all side effects have gone or lessoned.
I will need a good reason to return to high doses of prediscone.
talk again to your neuro are you like me overdosed?
:hug: