[erinhermes]

DO ANY OF YOU HAVE AWFUL, GUT WRENCHING PAIN IN YOUR LEGS AND BACK? I MEAN SO BAD THAT YOUR MUSCLES LOOK LIKE SOMETHING OUT OF "ALIEN"? YOU CAN SEE THEM MOVE AROUND?
I'VE BEEN TO THE ER MORE TIMES THAN I'D LIKE WITH THESE PAINS AND JUST FOUND A GROUP OF PEOPLE WITH MG THAT HAVE THE SAME PROBLEMS!!!!!!!!
WAS RECENLTY DX'ED WITH CRAMP FASCULATION SYNDROME........THOUGHT I WAS CRAZY, AS NOTHING HELPED WITH THE PAIN AND MY BLOOD WORK CAME BACK - AND MUSCLE BIOPSY CAME BACK - NORMAL.....
ANOTHER NEURO DISORDER. THO I DON'T KNOW MUCH ABOUT IT......
MG JUST SUX....THIS MAKES MG, BRITTLE BONE AND NOW CFS......DON'T KNOW ABOUT YOU GUYS, BUT I AM GETTING MIGHTY TIRED OF HURTING....
HOPE THIS POST FINDS YOU IN BETTER SPIRITS!!!!!
READ 4-EYES REPORT ON REMISSION AND THAT MADE MY DAY!
HGS!
ERIN

P.S. IF YOU DO HAVE CONSTANT CHARLIE HORSE PAINS AND CAN SEE YOUR MUSCLES MOVING, YOU MAY WANT TO ASK YOUR DR ABOUT IT......

[rezmommy]

Hi Erin,
Sorry to hear that you continue to struggle with your health. I do not have anything like the pain you describe but I do have a strange feeling in my stomach. If I do any type of movement that uses my stomach muscles, I get a pain and I have to go still until it lets up. I have had this ever since I got diagnosed. This is any type of movement, such as bending over to put my shoes on. Not sure what this is.

I do hope there is some answers for you now that you have another diagnosis.

[teresakoch]

Just a question - what dosage (if any) of steroid/immunosuppresant are you on? I am becoming more and more convinced that a weakened immune system causes severe pain (and obesity, and diabetes, and.... the list is endless)

Unfortunately, we have to be on IS's to manage the MG.

I'm one of those folks who always tested negative for diabetes; a month after starting prednisone, my blood sugar had jumped into the pre-diabetic level - you can't tell me that was a "coincidence"....

Are you currently taking potassium supplements? I found that when I started on that, muscle cramps would wake me up with excruciating pain in the middle of the night. When I stopped the potassium, the cramps went away.

My family doctor put me on potassium when my levels dropped not long after she changed my blood pressure medication - low potassium is a known side effect of that particular BPM. If my potassium levels come back low this time, she's going to change it to something else, because I have let her know that I will not be taking any more potassium supplements - the pain isn't worth it.

I initially took one pill in the morning (10 mg) - noticed cramping, but I didn't make the connection. After my bloodwork showed my potassium levels were still low, my doctor increased it to a pill in the morning and one at night - when the cramping started at night, I basically told her I was going off of the nighttime dosage as an experiment; the nighttime pain stopped immediately. But I was more attuned to the fact that I had experienced cramping with the potassium, so I had an explanation for the bad cramps I was getting during the daytime as well (realized I had not experienced them before starting supplementation). So I took myself off of them completely, and have not had any cramping since then (I'm driving my internist crazy..... ).

For most people, too LITTLE potassium will cause those cramps, so we're stumped as to why I'm cramping with supplementation; there may be something else in the pills (potassium chloride) that is causing the cramping, but I haven't found that I experience any cramping whatsoever with a lower level of potassium in my system.

It may be that there is some as-yet-unknown adverse interaction between the medications that we take for MG and potassium supplementation - heck, I'm always open to new/unexplored possibilities; since MG is so rare, it's more than likely that MANY drug interactions haven't been studied.

(It would be interesting to see if people who are on steroids experience these cramps if/when they are put on potassium supplementation)

That's just my experience, FWIW (and I could also see the muscles visibly cramping up while I was on the potassium).

Are you on a gluten-free diet? You might find some measure of relief with that, as well....
(You may find that it helps your bones as well - osteoporosis is something that is seen in people who are gluten-sensitive; I think it all goes back to a depressed immune system also, and steroids don't help that one little bit )

[Geode]

Teresa,

Myotonia is muscle cramping and many forms can be triggered by potassium. There is even one called "Potassium-aggravated myotonia."

Some forms are also associated with muscle weakness, you're not seronegative, are you?

[teresakoch]

Yes, I am seronegative; however, I was started on the potassium supplements several months after my MG diagnosis (arrived at through a dramatic improvement on Mestinon trial).

I had what they THOUGHT was a heart attack last December (angiogram showed NO blockage in any arteries; nobody knows why I tested "positive" for a heart attack); my internist put me on a different BP medication which is known to deplete potassium in some patients, so she prescribed a supplement at the same time. It was a month or so after that - when bloodwork showed that my levels had dropped despite supplementation - that she put me on a higher dosage.

Thanks for the info on "Potassium-aggravated myotonia" - I'll have to add that to my list of "you learn something knew every day"....

[dewcole]

I have been getting cramps all over my body. My toes and the bottom of my feet. Even my tongue cramps, and that is a very strange and scary feeling. I was dx with MG about 2 wks ago, but have had the cramps for about7 months.