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-   -   Frustrated (https://www.neurotalk.org/myasthenia-gravis/173080-frustrated.html)

paulie04 07-11-2012 03:58 PM

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.

4-eyes 07-11-2012 04:28 PM

I'm sorry to read of your issues. The fact that you have lesions, plus your symptoms of memory issues and balance problems does look more like MS than MG. The lesions especially are indicative of MS, so I'm a little confused about why the doctor "can't" diagnose you.

Have you posted on the MS board? They may be able to answer some questions for you.

Good luck and don't give up looking for answers!

restorativepose 07-11-2012 06:41 PM

Hi and welcome.

I agree with the previous poster about checking out the MS board. I was on there for a while and always had many replies within a couple hours of posting. Also they're really big on the "thanks!" button (FYI)

It's unusual for those of us going through the diagnosis process to have leisons on the brain and continue to be considered as MG suspects.

I think for most of us with MG symptoms, the MRIs come out clear as as whistle. But of course, continue posting here and anywhere, and ask as many questions as you'd like : )

jana 07-11-2012 09:47 PM

I have a spot(s) on my brain -- the report says that demylenation (sp?) could not be ruled out. I'm totally positive on my MG bloodwork, too -- Modulating, Binding, and Blocking antibodies. I did a lot of research trying to figure out WHY I had the spot(s) -- some sites said that spots were possibly due to migraines. My MRI hasn't changed, either -- no growth in my spot(s). :)

I've had the dizziness/balance issues with the double vision. NOT fun! I've also had some memory problems -- worse when I'm in exacerbation.

Hard to tell IF you have MG or MS or something else. Some of your symptoms ARE common in MGers. You are probably gonna have to see a specialist.

huntress 07-12-2012 05:44 PM

hmm, get an appointment to see a neurologist and make sure there good. Your symptoms sound like both MG and MS. I have MG and dont have any spots on my brain, they did a ct brain scan because i hit my head really really bad. Keep us informed. And my Prayers are with you.


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