[Annie59]

Good grief......what a morning!! My breathing and general muscle weakness is still worse tho I am seriously resting 24-7. For reason I am not sure of it tanked worse this morn. I had to get up and take mestinon early cause I could lay down with breathing like that.

I put bit of dairy in tummy and took a small dose of mestinon which is normal for me. I became sleepy when it had kicked in and other meds I take took care of the other pain issue. I headed for bed again. Ended up staying up as the breathing worsened. I ate a meal and had a larger dose of mestinon after. I laid back down grateful I could tho I added extra height to my stack of pillows to help breathing. About 30mn in my bowels started to cramp. Long story short I ended up in one of the worse reactions I have ever had to my mestinon! It was as if I had taken 4 times the amount I took or more!

First the bowels went heading to the bathroom for the diareah and there my tummy started in coming close to vomiting. Also all the area around my eyes began to spasm fast and constantly. When I finally was able to move to the couch I realized my diaphragm area was doing a similar thing. It was this mass of jiggle as if a bowl of jello on a table that had been bumped hard.

This is truly weird. I took more than this amount midweek when I had been on the phone so much my breathing was going down. The only big change is that last nite got really cold in here and my body does respond very strongly to that. I use cold packs from the freezer to help my muscles at times. (see Katie Jasmons video on Youtube or the other site it is something I totally get and it works for me). One of the things that seems to throw my docs is that the first year I was sick I got alot better during the winter of the upper midwest. At nite I ran little heat as I learned how much it helped my over all during the day. But I also had to cut back on my mestinon some as the weeks passed as my body literally didnt need as much and did act like it was too much for me. But never did I have this strong of a reaction. I have all of these reactions in a smaller way. Oh and it also affected my speech today.

Do any of you have the winter/ cold thing? I have having aanother day of much rest so hopefully I can call my mom in a couple days.

Annie59

[AnnieB3]

Annie, You need to get to your doctor and talk about all of this. We can't really do anything but support you, which I'm more than glad to do.

There are three types of reactions you can get from drugs. I'll use Mestinon as an example.

http://mestinon.com/index.jspf

1. Side Effects: A side effect of Mestinon is something like having diarrhea. Valeant uses side effects and adverse effects interchangeably. That's not entirely accurate. A side effect is something to be expected from a drug for some people.

2. Adverse Reaction: An adverse reaction to Mestinon is something that is not necessarily "to be expected." That could include muscle twitching, cramping and increased weakness. That may be a sign of an overdose or not taking enough of the drug. Or it could be an adverse reaction to any ingredient in the drug.

3. Allergic Reaction: An allergic reaction would include things like increased mucous, throat closing, hives, anaphylaxis or anaphylactic shock. Not everyone has all allergic reactions and may only have one.

Take chemotherapy drugs, for example. A side effect is anemia or losing your hair. Not fun but they are to be expected. An adverse reaction would be hemolytic anemia or bleeding, something that isn't really expected. An allergic reaction is always the same for any drug, even if it presents differently in everyone, such as the hives.

I honestly don't know what you have had. Only you and your doctor can figure that out.

Are you sure you aren't lactose intolerant and that is causing the upset stomach?

I think a discussion with your doctors is the best. None of us are doctors and we don't know your entire medical history or what drugs you are on. Please call your doctor.

Annie

[redtail]

Yes I agree with AnnieB3, you really need to talk to your Dr, yes we can support you but your Dr and you know your body best, and can work out if its too much or too little.
take care and see your Dr asap
Kate

[Annie59]

Thank you for your responses. It was good to see the reactions as you itemized them AnnieB3. I'd never seen it done so clearly. In reading another post this morn under the muscle biopsy post she remarked about staff saying her body reacted like that of 'an old person.' I have gotten that too. One of the first big reactions I had was like that. It it truly frustrating to me that I am not a 'more standard' patient when it comes to meds. I wish so much I was.

I am relieved to report that I have not had the same thing happen in the past 2 days. Thank Heaven. My breathing is so much worse and not recovering the same so I know to be super gentle, let my daughter know what is going on and rest 24-7.

My pulmonolgist is aware of what is going on and I have his direct number ( secretary) and was put thru fast last week with just the mestion of my name. My pulmo is just as frustrated by my neuro. I told him (lung guy) after IU talked my neuro that coming down to the university to jump thru hoops for her (neuro) given she has such an insane bar for it it not worth my health. He (pulmo) and I have discussed what needs to come next and that will be done with the new neuro Nov 2nd and the following weeks. I need to commit to the muscle biopsy which I am now OK to doing as long as the new neuro will see that a) it gets done correctly, and b) gets read correctly. I absolutely have no trust in that happening with my current neuro. I did my research on biopsies of this type and these elements are important.

I have Lifeline now and told my pulmo this tho he stressed DO NOT let it get that bad before you come. He is worried.

About reactions I think only 2 of the long list of medications on my list for docs are true allergic reactions which I say if given the opportunity. My list frustrates nurses and docs. I am allergic to Depo Provera and an antibiotic I taken over 10 years ago. I have valiium on my list and the oral surgeon asked me about it but was understanding when I said it wasnt the base drug it was a binder/additive thing.

Annie59

Originally Posted by redtail

Yes I agree with AnnieB3, you really need to talk to your Dr, yes we can support you but your Dr and you know your body best, and can work out if its too much or too little.
take care and see your Dr asap
Kate

[GI6607]

Annie, I hope everything improves for you. I posted a reply to the Desert Storm/MG message a moment ago.

[Annie59]

I do think I figured out what happened with my mestinon. The pills I used that day were my new ones fresh from the pharmacy. NOw yes it still may be part something else but I do think that since I had been using a bottle that had gone into that place where they are pretty crumbly from absorbing moisture it would make sense that the new pill could be a little different. That day was the first day of trying a larger more consistant dosing too so maybe just bad combo of things. Truly this was my attempt to do something that was easier to do given the brain mush that is worse. Guess it backfired.

Annie59