Tentative Diagnosis-- started mestinon
 

Hello again.

So yesterday I met with the Myasthenia Gravis specialist and he does think that I have MG. He did an exam, which showed mild to moderate muscle weakness around my face and neck. He also found a tremor when he strength tested my arms and legs. No weakness there though. He ordered blood work for all the possibly antibodies and thinks the MUSK one is most likely.

And he gave me Mestinon to try. He said it was partly diagnostic-- if it works we can be fairly certain it's MG.

Today was my first day on it. I don't know if it works or if I just want it to work. But I did notice a difference, albeit short-lived. He warned me about side effects but I didn't notice any. I just wanted to know if it seems likely that it was really helping or not since it only seemed to last a couple of hours before starting to wear off.

I also wondered if anyone knew anything about the tremor. He said it wasn't how MG usually presents but it is odd. Does anyone have anything similar? Basically when he pulled against the muscles they started to shake.

One more question that I imagine I'll have to ask when I go back-- I'm a power lifter. Heavy barbell weight lifting. I assume power lifting is out. Does anyone know if weight lifting is completely off limits or if I might be able to stick to lighter weight?

Thanks.

Welcome
Mestinon only lasts about 3 hours. As for power lifting I don't think that will work with MG. I have hand tremors my doctors say it is related to my MG, more to my age 74.
Mike

Hey, ArtandIron. That's good that you have a diagnosis!

If my arms are weak, and I lean on a desk, for example, with both of them, my arms will have a "tremor." And, yes, that is from weakness! It happens when muscles aren't holding a contraction well.

Mestinon kicks in after about a half an hour after you take it. It wears off about 2-1/2 hours after you take it. So you get about two good hours of use (not to contradict you, Mike!).

It would be a good idea to write down the dose amount and when you took it. If you don't have any side effects, there's no point in writing those down. :cool:

I have kept a journal of times/doses ever since I began taking Mestinon (2001), because I don't want to forget when I took a dose and take one too soon. It's happened, even when I write them down!

I used to lift weights, too (or at least attempted it a lot due to having MG since about birth). And, yeah, power lifting is out. ;) Or at least until you can stabilize MG. Mestinon alone won't do that, because it doesn't suppress the immune system that's making those antibodies that are attacking your neuromuscular junction.

You can still exercise, but I would wait until you know how you're doing. The fact that your muscles are shaking during just a neuro exam tells me that your MG is not good right now. You can have as much benefit from something more "fluid" like a Total Gym or even thera-bands. And keeping the reps down or spacing them out is good. Having a fan blowing on you while you exercise is a very good idea, so you won't be heated up. Swimming is a good exercise for MGers, if the water isn't too warm.

Also, investing in an oximeter is a good idea, too, so that you can see what your pulse and O2 do during and after exercise. You can always get a referral to a PT who knows about MG so that you can discuss any other options.

For someone who loves to weight lift, that might one of the hardest adjustments for you. A new way of doing things isn't bad, just different. You might have to dial back your expectations from now on. :hug:

Hey, Mike, are you sure you don't have an electrolyte imbalance, carpal tunnel, or a vitamin issue (due to the hand tremors)?

This sounds like something a grandparent might say, but don't stand when you can sit! Using those disability carts in stores, sitting while doing activities, etc. will save your muscles for what you really want to do. That way, you can conserve on energy. And don't be shy about taking naps or sleeping longer. That helps, too.

I really hope you can do well with MG. Keep asking questions!!

Annie

Hi Annie and Mike,

Thanks to you both.

I've been trying to lift in spite of my symptoms but frankly it hasn't been going well. I've stopped really enjoying it and struggle just to make it through a workout. It's the only exercise I normally enjoy though, aside from things like hiking and beach walking.

Does mestinon build up in your system at all or is it completely temporary? In other words, is today as good as it will get or will it be more (or less) effective with time?

It's a temporary fix. It does not build up over time, as immunsuppressants would. Sorry, but it's just a helper drug and it's effects are short-lived.

I'm really grateful for it, though, even if it only gives me two good hours of improvement! I will say that, over time, it does help for me to consistently take it every three hours. That way, my body gets a fairly constant supply of acetylcholine. Don't adjust your dose without speaking to your neuro, though! Everyone responds to Mestinon differently.

There's also the issue of supply and demand. If you do more, your body might use up acetylcholine faster. Talk to your neuro about upping your dose when you do an activity. It might take you a while to know how your body responds to the drug, though, and how you might change the dose amount or the spacing in between doses.

I love walking on the beach, too, especially the white, gulf beaches. It's a tough workout for the legs when you have MG.

You'll find other things you like, I'm sure. The most important thing is to not push MG. It'll push right back. Some "newbies" do that and end up in a MG crisis. When MG gets that much worse, it takes a lot longer to recover from it. It took me a month and a half to recover to an "okay" point (after steroids).

You'll get used to having MG. Cut yourself a break and try to think about your life in a new way.

Annie

I'm new to MG but not to chronic illness so I do understand. I think that's why I'm having kind of a hard time. I got my first diagnosis (fibromyalgia) as a teenager. Then they diagnosed lupus when I was in my 20s, and then they took that one away again because the test results failed to back up the diagnosis over time. Until 3 years ago it was fatigue and pain all the time. I quit my job and lost some weight and things seemed to miraculously improve. That's when I got into weight lifting. I even went back to work 3 days per week.

I was fine with the way things were because it was how they had been for as long as I could remember. But the way things got so much better and I had a taste of normal for awhile just makes it seem like kind of a cruel joke that I'm back here again and for a completely different disease.

I know I will be fine-- at one point I was used to having to take it easy, not let myself get too tired, spread my errands out over multiple days, etc and so I can do it again. But it just sucks.

Yes, it does totally suck! And we all totally get that.

:grouphug:

You might be able to lift weights when you are more stable. I am able to take ballet classes. Of course I am nothing like what I used to be but I still find joy in doing what I can do. Some days are better than others and I have to take extra mestinon to make it through a class. Lifting weights might be a little more dangerous but maybe you don't have to totally give it up. Like if you use the Hoist machine where there is no danger of dropping it on your head. Don't give up if you love It. You can make it work (but wait till you're on a stable dose of mestinon)

Yes! AGREED!

One more question-- I'm a Navy wife and I spend months living alone. Are there any special precautions I should take? Do any of you guys live alone? I don't have any family here but I do have a couple of close friends. One of them is attached to the same boat as me so when my husband is gone hers is too.

Thanks for asking that. I was going to say something, but didn't want to overwhelm you!

If you have swallowing/talking issues, there are some MGers who record a message in case they need to dial 911. It has to be very specific, such as your name, phone (which they can see on caller ID anyway), and why you can't speak (i.e., "I have a disease called myasthenia gravis. It can make me unable to speak due to weak muscles, which is why you are hearing a recording and not my voice right now. I am having an emergency and need an ambulance. I live at ### address.") Or something like that.

It also helps to let your local police department know about this. They are the first responders and it's good for them to know that it isn't a crank call!

Letting the closest hospital know that you have MG and what drugs you're on is good, too.

Falling can be an issue with MG, so if you have a portable phone handy at all times, that's a good idea. So is kid-proofing your home and getting as much off of the floor and out of the way as possible. I can trip on my own feet at times.

It doesn't hurt to let someone know when you're going out. Or to at least check in after you make it back home. That might be overkill on a regular basis, but if you're not doing well, it's sensible.

I always let someone know when my MG is tanking. It also helps to make you feel better, because you're not dealing with it alone.

You should have a medical alert card and bracelet with you. The card should list conditions, drugs, past surgeries, implants, doctor's names/phone numbers, insurance info, allergies, etc. I even have a list of drugs I can't take, for various reasons (some are directly due to MG). Make sure the hospital has that list in your chart.

When in doubt, dial 911. And have a note for the ER doctors to call your neuro!

MG weakness can come on slowly, and you might not notice how badly you're doing unless you do things such as look at your face to see if it's drooping, hold your arms out in front of you to see how long you can do it, grasp something like a towel to see if you can make a dent in it, see if you can take a deep breath in or out (inability to do either is cause to go to the ER), etc.

Just set yourself up for success with MG. It can take some time getting your head around this stupid disease, but it's so much better to have plans in place. You might never go into a crisis—especially if you don't push MG—but it's a hard thing to predict.

Annie

Thanks, Annie.

You're right that's pretty overwhelming, mostly because I take a lot of pride in my independence. But it's all good information to have and will make my husband and family feel better about me being alone here.

weird did not see my nero .. had a dr telling me to get all my medical records that she will help me file for ssdi . and ordered mg bloodwoork ..... rt eye droopy ~ numb legs/hands .. sonogram friday on thyroid took a year to get to this stage ........ any one get negative blood work and get still get m.g. :confused: