Myasthenia Gravis Support Group

Hi,

I was just hit with OMG symptoms a couple of weeks ago at age 59 - drooping right eyelid...went to U of I - did the ice test, blood tests, a shot in each hip to see if the eyelid would lift - it did - so the eye doctor seemed reasonably sure of OMG as a diagnosis.

Prescribed PYRIDOSTIGM / 60mg / recommended 3 times a day although he said I could vary that depending on my reaction to side effects. Haven't really had any significant side effects.

Have to visit the neurologist for the MRI / CT scan in the next couple of weeks.

The medication seemed to uncover other symptoms as well...the eyelid lifts, but I'm also experiencing some weakness in muscle groups - it seems to move around from arms to legs to shoulders....and I am also now noticing a little bit of mild double vision when trying to focus - never had that before taking the meds.

My question is - does it take a bit of time (a month? 6 months?) for this thing to shake out and allow me to get a handle on what my routine will be now that I seem to have it? Or is it a crap shoot every day as to what symptom will mess with me during the day?

Thanks for any input.

Ted

I'm no authority, but, my experience with generalized MG is that it is very unpredictable from day to day. Pacing yourself is very difficult because you often do too much and seem to suffer for it subsequently. I've had prednisone, currently 120 mg/day, mestinon, IVIG, and Cellcept 2000 mg/day. I've gotten sleep apnea since MG and have weakness, breathing, and eye issues daily. For me, any kind of stress is a hair trigger for symptoms, either positive or negative stress. It's often been said that a "placid life" is optimum for MG patients. Neurologists are often shooting in the dark, too, and are doing their best to "stabilize" your symptoms with meds/treatments. But, the disease seems to take them down blind alleys, too. Some people go into remission, but, in the meantime, you'll appreciate lots of patiences with this fickle disease.

Take care, and know that there are lots of us rooting for you!!!

Steve

thanks, Steve. I'm getting that impression that there is no clear path on this one. Oh, well, we all get something eventually...I was hoping for a hangnail or something, though.

Put me down for the hangnail.

I have a hangnail at this moment. Unfortunately, the MG is still there...........

I still am have a hard time believing my diagnosis. My eyes also got better on medication. I didn't really notice generalized symptoms until I was on it. I suspect some of them were there, but they are worse now. I am seronegative. It seems to me that my diagnosis is based on other tests being negative and a bag of ice on my eyeball making it better. I am skeptical and frustrated.

I am not trying to hijack your thread. I am commiserating with you.

Post edited by: southblues, at: 07/09/2012 08:09 PM

Thanks, southblues - I'm pretty much at the same point...hard to fathom this coming on so quickly like it did - I'm the same - I didn't notice any other symptoms other than the droopy eye until I went on to this medication - now I have a bit of double vision, feel weakness at various times in various limbs...go in to a neuroligist at the U of I this Friday to try and get a better handle on it...if that's possible

I am on my second neurologist. I have been to two ophthalmologists and two general practice doctors as well.

In retrospect, I did have several unexplained falls before I got on medication. I still wonder if I don't just have a surgical problem with my eyelid and all of the other problems are caused by the pyridostigmine. Four doctors have said that is absolutely not true and I have MG. One said he had no idea. One said I should get checked to see if I was crazy.

I did skip it a couple of doses and things got worse, but it could be withdrawals. Like you, I was doing ok. I mentioned that my eyelid was droopy to my doctor. Thousands of dollars worth of tests later, the only one they are impressed with is the ice bag. It seems like we could have started there. Ice is cheap.

Hi Ted,

I've had OMG since I was 16 (Im now 35). I have all types of testing of course. I had an EMG that showed MG. A positive tensilon test (where your eyelid opens during an IV infusion of tensilon)- ITS+ is a pretty accurate test. Ive never had positive antibodies, positive MUSK or a thyoma. The thing with mestinon is that you'll only have side effects if your body doesnt need it. If youre completely side effect free, you can take more. The drug is very well tolerated by the body. It's never caused me weakness or falls. I take 180mg every 4 hours and have zero side effects when Im sick but as my body gets better I have to take less or I have muscle spasms and diarhea. If the double vision becomes a problem then you can purchase an ocluder lens for one eye. Its a contact that blocks the vision in one eye. I bought mine for $800 at Midwest eyecare in Omaha, NE. My eyes are dark brown so I got a black one thats not noticable but they can paint them to match any color eyes. Its been a life saver for me. High potency vitamin b helps lessen weakness. Accupunture has been proven to lessen symptoms for me as well. In general, OMG comes and goes whenever it feels like it. Stress seems to make the symptoms worse but even in my most stressful times Ive been symptom free. Short treatments with prednisone will put me into remission for up to six months but be careful because going on and off predisone causes your body to become resistant to it (then, you have to take more and have more side effects) Anyways, hope I helped you a little. Ive been living with this disease for years and all and all ITS NOT SO BAD! Just make sure you find a neurologist that knows what they're doing. Ask them for a list of medications that MG patients cant take because there are a lot of meds MG patients shouldnt take. Good luck to you, Tessa