Hi all,

So it's been a while since my last post, as I have been trying to work through this disease with my current Neuro.

Last Sunday I pushed myself to far I think, I have been feeling strong the last two weeks and thought that the Pred was finaly kicking in after 9 months so I went for a short bike ride (Something I miss dearly since being diagnosed) about a year ago. I began to experience weakness and had to stop and head home. Later on I began to lose strength and it felt like someone was sitting on my chest. All this I have experienced before and I was able to manage with Mestinon.

The scary thing is is that both Sunday and Monday night I was awoken by chocking on my saliva and it was all over my face and pillow as if I wasn't swallowing it. I have had issues swallowing my pills at night before but nothing like this, the more I think about it, the more I'm scaring myself.

Has any one experienced this before I have been taking half a Timespan before bed. Or is this something I may need more acute treatment for. I was really weak yesterday (as if I had just run a marathon, but not as sweaty ) today I feel stronger and think that most of the weakness is over.

Anyways do you guys experience weakness directly after activity or do you experience a prolonged recovery with severe weakness 6-24 hours after activity?

Thanks again!

in the early days of my illness it was very hard for me to realize the connection between activity and worsening of my symptoms.

I now know that there is a clear connection, but like you say, many times it would be with a significant lag period. and with the fluctations of this illness, it was very confusing.

even though I consider myself a fairly inteligent person, it took me a long time to understand that if I over-excert myself, I will pay for it later, even if not right away.

I remember that at some point I asked my neuro about the level of activity that would be OK for me, and he said- I am sure you can know yourself. but, honestly I didn't. not then.

knowing this illness very well now, I am not surprised at all, that if you did something you haven't done for a year, you could easily push yourself over the edge. probably the short bike ride was not as short as you thought. you may have been comparing it to what you were able to do before, and not to what you can actually do now.

it's good that you are gradually recovering from this. and just try to increase your activity level much more slowly.

I know that for me the most "dangerous" times are when I am doing better. it is so tempting to do a bit more, when you feel that you probably can, and then crash the next day.

I now rarely do that, but still there are times that I just can't resist the temptation. and sometimes, if there is something that I feel is worth the price, I will just do it, knowing what to expect later.

still the fact that you were able to ride your bike after not being able to for a year, is probably a good sign that you are doing better. don't let this set you back, just try to go a bit slower.

maybe discuss it with your neurologist and see if there is any rehab facility that you can go to, and increase your activity level in a more controlled way.
it is very hard to initially do it on your own.

alice.

I don't know what other meds you take at night, but are you taking the mestinon with food? It may help if you don't lay down for a while after you take it. It's also possible you were getting too much mestinon...just throwing that out there. You should let your Neuro know what you told us and see what he/she thinks you should do. Glad you're feeling better. Take care and keep us posted.

Hugs,
Pat

Thanks Alice and Pat,

I take regular and timespan mestinon, I was taking the timespan because in the morning I was tripping over stuff (like my own two feet ) and I usually have it after dinner ~7 and I can hardly stay up past 8:30 anymore.

I agree Alice it's hard to know where that line is, and the darn thing seems to move on me all the time. I am glad to know that I'm not the only one who has a delayed but dramatic weakness, at first I was so worried that while exerting myself I would just keel over. But the Choking at night is worrisome for me...

Thanks for your input... it is much much appreciated

Ahhh take heart as I think we all do that at some time or other. I know I have. I sleep in a hospital bed {until I can afford one of those high dollar beds} so my head is elevated at night and the choking has stopped.

MG is just a very strange illness and only in time will you know what is normal for you.

I can't hold anything in my left arm for more than 30 seconds, a minute at most, so I have to use a shopping cart even if I am just buying milk. I can't wait for the spring because come hell or high water I am going to try to ride my bike again, my husband said he will follow me with the truck so when I have to stop he will be right there

What you describe is what happens to me as well. I too use to love to hike, bike ride, and lawn/gardening. I mean, I use to low, absolutely loved to do yard work, mowing, raking, all that stuff. But can't any longer.
I do think you should call your doctor and discuss this with them. Or if you go to a MDA clinic, you can tell your MDA counselor,and she'll relay it to your doctors assistant, or to the Doctor. I know, mine is really good at getting the messages or concerns exactly the way I tell her.
And I was curious about the Timespan. I haven't used Timespan, but I have to take a Mestinon before I go to sleep at night, other wise I awake to not being able to breathe.
It was my understanding that Timespan was not to be split in half or anything like that, as it was a slow release med. Unless it's changed since last I read up on it. So, you may want to ask about that, just in case, or read up on it.
My heart breaks that you have to go through all this. I remember being in the beginning of it all, and it was sooo frustrating. It still is at times, but not like the first few years.
Let us know about the Timespan, and how you're doing. Hang in there, you'll
get better at discerning your body's needs.
best of wishes to you
Love Lizzie
P.S. Prednisone shouldn't never take 9 months to kick in, it's usually with in weeks. I felt it with in the first week, it's fast acting this is why they usually prescribe it right away. Could it be that you need a stronger dose?