Mestinon
 

Well, it is TIME for my SECOND Mestinon pill of the day -- so, I can tell you what symptoms are most prominent right now:
*fatigue
*MAJOR slurring of words
*leg heaviness
*shoulders and upper arms are VERY tired
*fingers are slipping all over the computer keys

But, by FAR the WORST symptom that I WILL have IF I don't take a pill soon IS -- I will CHOKE on my lunch. So, I'm gonna go get my Mesty -- put it under my tongue to let it dissolve and get into my system -- and get something to eat.

I HAVE, upon occasion, FORGOTTEN to take a pill near mealtime (space-cadet here!!) and as SOON as I start eating, I am VERY quickly reminded that I DO have this beast called MG. The MOST fun is drinking tea and having it come out through my NOSE -- eeeeeekkkkkkkkk!!! NOT a pretty sight!!

I cannot drink liquids by tilting my head and sipping from a glass. I have to use a straw and keep my head at a normal angle. My lips are affected by MG, so it is difficult to hold onto the straw -- I do this "thing" with my lip and teeth. Whatever works, huh?!?!?

I like the Mestinon -- I used to have MAJOR constipation -- I am now REGULAR -- woooo-hoooo!!! (Yes, I know I'm weird!!) I do get some cramping with the first pill of the day -- not any worse than the Irritable Bowel that I've had for years. I can deal.

BTW, AWESOME idea for a thread, Lizzie!!!

I never knew about putting Mestinon under your tongue...... I always swallowed mine..... anyone else do it that way?

I never heard of the mestinon under the tongue either but it makes sense, I am going to try that in about 10 min :)

I take Mestinon syrup, due to my lack of stomach acid. It absorbs better than the tablets for me. It also goes to work a little more quickly.

I am on 90 - 100 mg. every three hours, round the clock.

Using an "under the tongue" drug, like sublingual methylcobalamin or nitroglycerin, is useful for a couple reasons. One, it goes to work quickly. Two, it goes directly into the blood stream and bypasses the GI tract for those with GI issues.

I don't have any side effects of Mestinon. Probably because I don't have stomach acid (if you want me to explain that, I will). I have had to go off of Mestinon for testing. When I go back on, I take the full dose. Nope, no side effects then either.

Mestinon also increases peristalsis. Peristalsis is how food is moved through the GI tract. It involves MUSCLES. The weaker them muscles, the slower food moves through. That's why on most bottles of Mestinon, there is that little sticker that says to take it with bread or crackers if it upsets your stomach. Carbohydrates "stop up" the GI tract. ;)

Symptoms off of Mestinon depend upon the day (what muscles I've been using and for how long) and time of day for me. I sometimes choke when it runs out. Don't even need to see a clock to know that my 3 hours are up - actually my 2-1/2 hours since that's when it runs out. I am noticeably weaker and short of breath.

This is a good idea, Lizzie. Everyone has slightly different experiences with Mestinon.

Annie

The Mestinon works in a rather strange way for me...

First, the regular tablets don't seem to work at all...I have to take the time-release tablets to get any effect...

I also don't experience the GI side-effects...I sometimes experience them with the time-release tablets, but I always take both with food, so this might be why...

I went to the pharmacy today to get my rx for the time-release, and it turns out that my neuro. sent a fax saying that I should be taking time-release once a day and the regular tablets 4-6 times a day. I'm so upset. I already told them that the regular tablets don't work for me, and they told me to take the time-release tablets twice a day.

The pharmacist seemed taken aback by how bad my speech and breathing are...I could barely eat...only had oatmeal, and I had to move it around in my mouth with my finger in order to chew and swallow it. My face is so weak, and everytime I say a word, I wheeze and suck in a breath...It's like my lungs are stuck...My symptoms are so bad right now because I ran out of the time-release tablets...She said that she will call my neuro. herself to tell them that I need the time-release...

I hate this disease.

Mestinon
 

Lizzie,
Awsome thread!!! I plan to keep up with this so I can see how others respond to it, especially since I have been concerned about it making my weakness worse.

Nicky,
I am so sorry you are having such a rough day. You are so young to have to deal with this horrible disease!!! I am 42 and feel like I'm too young. I can't imagine what it would have been like to be DXed in my 20's. Try and rest today and hopefully your pharmacist can get your script straightened out quickly. How nice of her to make the call herself. That says alot. Hang in there and know you are in my thoughts. BTW...I HATE this disease too!!! I am having one of those days where I feel like I have sooo much medicine in my body I can't seperate one problem from another.
Kendra

Thanks, Kendra...

I know! the pharmacist is so nice...She gave me two mestinon time-release to tide me over until tomorrow...Thank God..I'm able to move my tongue a bit now, and my face isn't so weak...

i know what you mean about the medicines...For me, the prednisone causes a lot of strange side-effects...When I was @ 80mgs, I got horrid palpitations, sweats, shakiness...My blood-sugar was really high when this would happen...Now that I'm back at 60mgs, my blood sugar isn't so bad, but I notice that my MG symptoms have gotten worse...

It does suck to have this, no matter what age you are...Sometimes, my energy levels are up and I feel like going out, or going back to work, I feel so bored staying at home all the time... but then I remember that i can't talk...I feel trapped by this...I wish there was a magic wand that would take this away. Sometimes, one thing goes away, and another things surfaces...Sometimes, I really miss my old life, and I don't want to lay it to rest...I just want it back for like 3-months, and then I'll take the symptoms back again...I've been bargaining a lot lately with someone, maybe God...But I find that it's better to forget how things used to be, because it's too sad.

Sorry I'm being so depressing:(

Edit: Hey guys, I just wanted to say sorry for being so depressing...i've been feeling pretty sick the last few days, and have been in a bad mood...I think that my MG is pretty abnormal, so for the newbies, don't worry, you will get better! Mine is just really resistant, but most people get well from the regular meds...Don't let my experience reflect how yours might be!

*hugs*
nicky

I do 180 every 3 hours,during the day, with time span at bedtime 180 tab. I do have my morning blow out, but once done with that I am good for the day, my stomache constantly gurgles though. Minor stuff though, the benifit outways the bad by far.