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.

Susan,

I just discovered I was taking too little Mestinon - and have now started 30mg every 4 hours 3 or 4x / day. (Sometimes I skip the last dose if I'm just relaxing at home.)

What a huge difference it has made! No side effects, but much better effectivity. I hope this works out this way for you!

Sue

Sue, this is exactly what I have been doing these last few days. With the smaller dose (30 mg instead of 60 mg) I get less of the side effects, shaking/dizziness/nervousness, than I did with the full pill. This is much better, no more morning dizziness or me feeling less crazy from the nervousness.

Hooray for Mestinon!

I definately agree that sometimes it seems that the amount of MEstinon required to help me gives me overdose symptoms...Sucky!

YES, Steph, this is OFTEN noted by MGers -- one of the "fun" parts of taking Mestinon. The "trick" is to take just enough to help the "bad" part of your body -- but, not so much that it will "hurt" the "good" parts. A slippery slope, huh??

THAT is why, after a while, MANY of our docs give us carte blanche to regulate our own doses.

If I had the strength to go downstairs and get a 60mg this would be a longer post. But I don’t, so I won’t. I have a love / hate (mostly love) relationship with Mestinon. I take what I want/need when/as needed.