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-   -   In process of getting diagnosed.. (https://www.neurotalk.org/myasthenia-gravis/22955-process-getting-diagnosed.html)

redtail 08-01-2007 07:50 AM

Oh Rumpled you whine away(although I dont think you are) I think it helps,
How did the mestinon knock you out? I know Ive had conversations with other people and doctors, and it should help your MG, and it should last for up to at least 3 hours. I know about the to complex, Im sure my doctor just groans when he sees me comming, I always leave without telling him the whole list of complaints!! I agree Id just like a common cold, or even just one thing wrong with me instead of several, it just aint fair is it?!?!?!? I hope you can find some help somewhere, someone who not only cares but can help as well.
You take care, and if you need to vent please do, it helps to get it out, and we all understand.

rumpled 08-01-2007 08:29 AM

I am not sure how mestinon is supposed to feel but how is feels for me is that I get a very funny feeling in my mouth. And my nose runs. I purposely try to use my arms as they are the weakest but since they are a bit frozen in the shoulders, it does not seem to have an effect. And the last two nights, I have slept solid and snored a lot (my husband complained!). My arms feel more heavy instead of better and with sleeping in such an awkward way, my neck hurts too. I don't know what I expected but... it just did not seem to make things work. I was trying hard to mash potatoes and stuff to push myself and I just got more tired. Hard to judge if it helped or not but I think mostly not.
Yeah my doc groans when he sees me too. :) He knows me so well that he does so literally!

redtail 08-01-2007 08:11 PM

Hmmmm, I know that when I take my mestinon, my eyes open up, and I get more usage(is that a correct word??) out of my arms and legs, ie if before I take my mestinon my arms arnt working, I may find it difficult to lift my legs or wash the dishes, after taking mestinon its easier, not 100%, but not as much of an effort as before. Hope this little explination helps you know how mestinon helps me. take care
ps just did a quick google and a runny nose can be a side affect of mestinon, which thankfully I cant say Ive had, just all the other unpleasant ones!!

loisba 08-01-2007 10:48 PM

My Mestinon is basically what keeps me going. If I forget to take a pill, I notice the fatigue when I'm about an hour over-due. Often the first thing I will notice if I am late is the feeling of a weight on my chest, from the fatigue of the breathing muscles. Then I know I've got to take a pill. Like right now, I'm late for my bed-time pill, and It is rather a strain breathing. Basically what I notice when I take the Mestinon is more a lack of fatigue than a positive feeling of being able to do more, more strength in arms, etc. Does that make sense? Just a the fatigue tends to creep up insiduously, until I realize I've forgotten a pill, so the effect of the Mestinon kind of "creeps" up, keeping me from feeling the fatigue.
:hug:

ibeeanurse 08-02-2007 08:55 AM

taking Mestinon at bedtime
 
Do those that have to take a bedtime dose of Mestinon have to also take a snack with it to keep it from hurting your stomach?

redtail 08-03-2007 04:11 AM

When I use to take it,(mestinon timespan) I took it with a glass of milk,once I knew how it upset my stomach and intestines, but it still made me quite ill, I use to wake up every morning and vomit, not the most pleasant experience, but it helped my MG so much I suppose it was worth it

rumpled 08-03-2007 08:32 AM

I take it with food or milk as it upsets my stomach as well. Unfortunately with no adrenals, vomiting is a bad situiation with me and can lead to a medical emergency so trying to avoid it.

Since I have tried the mestinon I look like a raccoon with dark circles under my eyes.
I think I am going to report that it is not making a difference. I wonder if that means he will try me on something else. I don't see the other doc until the end of September.
Question for Lois or others - do you have fatigue normally and the med takes it away somewhat? I have wasted muscles and then when I do anything, I just go downhill from there. The mestinon does not allow me to recover so it sounds like it is not working for me. My face and breathing are so far fine. Arms and legs get weak with use and then do not recover for days.

loisba 08-03-2007 07:55 PM

I usually try to take my Mestinon with food, even the bedtime dose, but I've found that I've gotten so used to it, that I can get away with taking it without eating anything.
:hug:

redtail 08-03-2007 09:16 PM

Hi Lois, how long have you been taking mestinon for?? Ive been on it for nearly 5 years, as well as prednisilone and azathioprine, and I still have my occasional "toxic" times, every few months I have a few days of nausea, and sometimes vomiting if I dont start the probanthane quick enough, and running to the toilet very quickly. I try and look on the bright side and hope one day I may be off a few medications!!
Rumpled, I do hope your doctors come up with an answer. Yes my medication (mestinon) does help with my fatigued muscles, although it doesnt bring them back to "normal", just to mg normal. I am finding typing hard at the moment, so Ive just taken a mestinon, and hopefully my fingers wont be so slow soon, hope this helps.

lilviking 09-06-2007 08:53 PM

I've taken mestinon for a few years now, but have not suffered from nausea except when taking timespan. Still, I nearly always take it with food just in case.

The mestinon is supposed to result in decreased muscle fatigue. It has never seemed to helped 100%. I am more able to function most of the time as long as I take it. Of course I still have to use what energy I have to explain that even though my muscles are tired I am not sleepy.


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