DesertFlower,
I totally knowwhat you mean about the shaking not being visibe. It feels like it should. I told my Dr. that I feel like I should be physically trembling but you can't see it always. I am anxious to hear if you find a steady dose that seems to work for you. I like the idea of writing down times and results so you can lok back. I think I will try that too. One other symptom I have been having alot is when i feel dizzy my eyes feel like they are shaking too. I feel so dizzy sometimes that I have to sit down for fear of passing out. It is very scary when it happens.

Yeah I guess we have to laugh about the meds or we would drive ourselves crazy for sure!!! I hate to think it is the Mestinon but am starting to think it has to be. I hope for you it is so you don't have to battle your PTSD on top of everything else. I know I have mentioned before that my 16 year old son was in a 4 wheeler accident 2 years ago. He was going up a hill and it fell back on his face and broke every bone except his chin. He has had 3 reconstructive surgeries and was left with nightmares and PTSD also. It is so hard to watch! Luckily with the help of several professionals we have got it under control. It has been a long 2 years but when I look back at where we started we are so very fortunate.
Take care,
Kendra

Kendra,
My eyes feel like they are shaking sometimes too, such a strange feeling. They shake after taking Mestinon and also when I am getting weak and need Mestinon. It is so complicated. We do have similarities. I hope your son is doing well. PTSD is not fun and I do not wish it on anyone. I remember so many days of going to do something simple like grocery shopping and realizing that I was terrified, heart pounding, tense muscles, heavy breathing, etc. It took a lot of work to re-train my brain to know that these activities are not dangerous. I hope it is the Mestinon causing my recent nervousness. I talked to my MG doctor about it and he said to go back to my therapist.

I want to clarify something for others reading this. I am adjusting my dosage per my doctor. He suggested that I try taking Mestinon at different times of the day and also to try 1/2 pills intead of whole pills but with keeping the total mg per day the same as I have been taking(90 to 120 mg per day total). Always talk to your doctor before changing your dosage since your doctor may have a reason for a specific schedule.

Here is my "broken record" -- I feel the weakness and shakiness, too -- and I DRINK more. It stops almost right away!! Overdosing for ME means that I have hot flashes and diarrhea -- so I KNOW that my weakness and shaking is NOT from overdose -- I can only guess it is something akin to dehydration. All I know for sure is this --- as long as I drink a LOT, I do NOT have this problem. I am a frequent bathroom visitor (urination) -- small price to pay for being able to swallow.

I take one pill every 2 to 4 hours during the day -- and one AT bedtime. I have NO problem with Mestinon keeping me awake. I do NOT take Timespan or any other Mestinon during the night. I take one AS SOON as I get up in the morning. I usually put the pills under my tongue and let them dissolve. (Forgive me if any of this is a "repeat" -- I tend to get "lost" in forum threads.)

Hi Patrick here.
When i take my morning dose it takes at least four pints of water to get the steroids in the system as my spleen kidneys or whatever it is cries blue murder with sharp pains on my left side .
I then continue to drink a pint an hour all day.
It is the only thing that helps.

I

That's okay, PMC! I'm glad that you're finding it helpful! I was the same way around the time I was first diagnosed- I wanted to know everything about this illness, as the symptoms can be pretty frightening/life-changing!

I think that it's great that your taking the time to really pay attention to all those things that you can control- it really helps to feel like you're in control, and to find that you are in many ways!


Nicky

Patrick, Any symptom like pain in the back by the kidneys is NOT normal. Has anyone done a urinalysis on you? Don't mess with the kidneys. It can be an infection, kidney stones or lots of other things.

Jana, Do you go to the bathroom a lot only because you drink a lot of water? Polyuria (needing to go a lot) needs to be looked at if it's not from a LOT of water drinking. Is it you too who has a BP that goes up and down a lot? If so, that is a sign of dehydration (low BP) and then getting adequately hydrated (higher BP). Has anyone checked both a serum and urine osmolality on you? It shows how hydrated you are.

Any new symptom needs to be told to your primary doctor! Please.

Yes, I only go to the bathroom a lot WHEN I drink a lot. My bp has always been low. Since I've had MG -- and my bad experiences with the BIG TEN neuros -- I've had "white coat" high bp -- not REALLY high -- more like 140/85 or so. But, that is ONLY when I am IN the doctor's office -- all other times, it is 100/70 to 90/60. In my twenties, I would get so dizzy/faint from squatting or kneeling -- couldn't figure it out -- got my own bp machine. Have checked my own bp regularly ever since.

I have HUGE veins -- like MAN-sized veins. Not sure if that has something to do with it. The veins on my hand and feet look like small ropes. I used to give blood regularly -- the nurses/techs would fight over me!

BTW, I LOVED giving blood -- it made me feel GREAT. I even mentioned this to my neuro --- and finally talked him into letting me try this as a "treatment". He set up an appointment with an oncologist/hemotologist -- who went WACKO -- and thought I was INSANE -- and said that the ONLY way he would even consider such a request was to HOSPITALIZE me -- and that my insurance would NOT cover the cost!! Needless to say, it didn't happen. But, I swear -- I was still giving blood up until my dx -- and I was having symptoms for at least 2 years prior to dx.

Thanks Annie,
I am taking penicillan for my first white spot throat infection which has also started sorting out the kidney infection .
I want to take you for your help paticularly inhelping me to understand my condition and the support you have given me on this site.

Hi guys!

I know I have been MIA but I have a question. When I take 5 ml of the syrup it helps my breathing to the point where I can swim WITHOUT my oxygen, but everything else twitches like I'm overdosing. Does anybody else have that problem where it helps one thing but makes another worse?

Steph

I have very much the same problem. I take between 90 to 120 mg of Mestinon daily, but it is frustrating since the amount it takes to make most of my symptoms go away also gives me twitching & shaking & nervousness.

I have talked to my doctor about this and he doesn't have any ideal solution, other than to suggest spreading my dosage out more during the day (4x 30 mg instead of 2x60mg), so I am trying it now.

For me, if I take 120 mg every day the twitching and shaking turn into muscle cramps and pain which is too much Mestinon. I have to be careful not to take too much Mestinon, but I am so thankful for it.