Frustrated
 

Hi, I'm a new member who is still trying to figure out if I truely have MG. I have double vision with ghosting although it only happens in the am usually after I have been out of bed for approx. one hour otherwise my eyes are fine. This does not happen everyday. Although it can be for 1-2 days in a row or 10 days. It varies dramatically. At the time of the double vision I have dry mouth along with some sluured speech and difficulty verbalizing words at times. I am also having difficulty with memory at times. My balance can be off usually during time of episode. I do have fatigue that usually accurs later in the day. I have had MRI which shows four lesions on my brain which has not changed in two years. Spinal Tap shows minimal elevation in antibodies. I have seen a neuro optalamologist in Boston who states I have no problems with my eyes neurlogically. I have also seen an ear, nose and throat MD thinking maybe it is an inner ear problem. My neurlogist states she is unable to dx. me as she feels it may also be MS. I have been out of work as I'm unable to drive at this point. Does anyone have any of the same problems. I am well aware that with MG symptoms usually occur as the day progresses but I am very confused.

HI Paulie -- Welcome!

MG is characterized fatiguable weakness. In a nutshell, that means that the more we use our muscles (even the ones we don't think of, like around our eyes) the weaker we may get. Now the weird part is, the muscles don't always weaken the same way or at the same rate from day to day, or even from hour to hour within the same day.

For me, I can't describe it as having 'episodes' -- but others here may feel differently. For me, my arm or legs get 'heavy' and it just takes too much effort to use them effectively. That means its either time for some Mestinon or time to rest. MG is not the same from person to person ... that's why this forum is so helpful. It makes us more aware.

Have you been tested for MG (blood draws looking for certain antibodies)? There are some specific things that can make an MG diagnosis definitive. But someone can still have MG even if they don't test positive for those antibodies.

I have no idea whether you have MG or not...but if you can not have the discussion you wish to have with your current neuro - perhaps it's time for a second opinion. In the meantime, there are many folks here who have gone through a lot over (sometimes) years, before finding the right neuro and getting our dx. We all benefited from keeping our own records, getting copies of all our docs notes and test results, etc. A journal is helpful too.

Unfortunately, with most neuro illnesses, we have to be our own patient advocates (even though we are often too exhausted or beaten down to want to!!) Whatever you do, keep searching until you find someone who will help you. They are out there...they really are!!