Scary new symptom
 

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 :eek: 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 :confused: 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 :p) 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 :hug:

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 :)

Hi Lizzie,

When I was prescribed the Mestinon my Doctor made note of the fact that it is pre-scored to break in half. I did some futher research and found that it is a wax substrate embedded with mestinon and the absorption is dependant on the time in your system, well as we all know with mestinon that time can be dramatically different based on whether or not there is food in the gut or not, and sometimes with me at least Mestinon goes right through me regardless. Therefor most doctors have issues with it saying it is timerelease but that time is dependant on your digestion and all thats going on with it.

With the Predinsone I just can't seem to break the 60 mg mark, and getting to this point has been a rocky one, it just makes me sick, so the docs at MGH are looking at Imuran. I just hate being on these long term meds because I am only in my mid thirties :mad:

Thanks for your concern! :hug:

Hi Lizzie,

Thanks for your concern, and believe me the last thing I want to do is get sicker. I had asked my doctor about this because I have been unable to go above 30 mg Mestinon in a single dose, because I get extreme stomach upset, and he said that it was ok to break the Timespan in half.

Below is a ling to drugs.com to a picture of what the timespan looks like...

http://www.drugs.com/imprints/icn-m180-3430.html

So I have been taking it this way for over a month and not had any problems, and it seems to even out the valleys between the regular mestinon. I have seen the warning on the valeant website, but again I think this is a decision that you and your doctor need to make together.

Thanks

Bill