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Myasthenia Gravis anyone?

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  • Original Poster

    #21
    Thanks for the giggles! Yes, the Holy Hand Grenade of Antioch might be the solution! Of course, those counties might not like that, either...

    Here in St. Louis County, they probably would care if you drove a tank down the highway. That would certainly be safer considering the drivers around here.

    I did see an eye doctor yesterday and have learned a few things --- no definite diagnosis, but a couple of maybes... My eyes, for example overcompensate -- that basically translates to my needing a strong prescription for my glasses than a normal eye exam indicates. Dilate my pupils so my eyes can't overcompensate, and I need something stronger. So I'm getting my THIRD set of lenses this year. (Sheesh, $517 for the lenses, thank heavens the frames are ok.)

    Hmmm, are you chasing those skunks out of Maryland and into St. Louis? We did have a skunk in my building at work this past spring. It smelled horribly, but wasn't as bad as the flea infestation the year before that...

    Comment


    • #22
      When you see double, what happens if you close one eye?
      Jeanie
      RIP Sasha, best dog ever, pictured shortly before she died, Death either by euthanasia or natural causes is only the end of the animal inhabiting its body; I believe the spirit lives on.

      Comment

      • Original Poster

        #23
        If I close one eye when I'm seeing double, I'll see only a single object. Doesn't matter which eye I close. I've learned to do that for the short term, enough so that if I'm driving, I can safely get off the road.

        Had a 3 hour eye doctor appointment yesterday, ran a lot of tests, and nothing certain yet but did find a couple of odd quirks, like my eyes over-compensating --- i.e., if my eyes are tested, I end up with a lens prescription of X, but if my pupils are dilated which makes my eyes unable to over-compensate, the true or hidden prescription shows up --- I need a stronger prescription. Maybe, just maybe, my eyes suddenly decompensate which causes the double vision --- they don't think it's likely, but since I need new lenses (for the 3 time in 12 months!), we'll be able to find out.

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        • #24
          Wow Donk...wouldnt it be great if that is what it is!!!!
          my fingers and toes are crossed for ya!!
          Happy happy new year
          Leslie
          Ps As for the fatique and weakness...remember if your eyes are outta whack...your brain is working overtime so maybe that fatigue is caused by that. and ofcourse its also causing the double vision.

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          • #25
            Here's hoping!
            www.specialhorses.org
            a 501(c)3 organization helping 501(c)3 equine rescues

            Comment


            • #26
              This is a wild and crazy thought, and the reason I thought of it is because I had eye surgery as a young child to correct strabismus and/or amblyopia (eyes not moving and focusing together). Unfortunately, back in the day they did not know it should have been done at a much younger age, so I never developed binocular fusion, but at least having the surgery helped me * stop * seeing double.

              So, now the thought occurs to me, I wonder if there is any precedent for an adult's eye muscles to stop working together, causing late in life strabismus? Or, if the OP may have had eye surgery for the condition at a very young age and (as my Opthalmologist explained does sometimes happen), the sutures that 'tucked' the muscle give way or the muscles become lax for some other reason.

              I did some searching and found http://en.wikipedia.org/wiki/Strabismus which includes an interesting statement indicating I may have thought of something useful, 'In adults with previously normal alignment, the onset of strabismus usually results in double vision (diplopia).' So, that means it is not unheard of for this to happen in adulthood.
              Last edited by sdlbredfan; Jan. 1, 2010, 12:26 AM. Reason: add something
              Jeanie
              RIP Sasha, best dog ever, pictured shortly before she died, Death either by euthanasia or natural causes is only the end of the animal inhabiting its body; I believe the spirit lives on.

              Comment


              • #27
                There are stem cell procedures for the eye. Dr. Crane knows who is doing the research work and the current state of the art.

                There is a whole new speciality developing with the stem cell work and soon there will be a center for teaching it.

                One of my close friends was in a very bad car accident and has many of the issues that you are dealing with. Her legs do the same thing.

                My personal theory is similar to stblfan, that the mind is working so hard to find balance and depth of focus that it gets exhausted from overload and the signals to the legs short circuit and lose their rhythm.

                I know I keel over when the spinal nerves get zapped. I also have similar exhaustion with the eye issue. the eye dr that I saw before Xmas, said that I am starting cataracts. I consider myself to be much tooo young for cataracts! Humph!

                Now, I am planning on getting some 2nd opinions.

                By the way, the new eye glasses are driving me crazy. There is no periferal vision because it is all blurry. It is AWFUL!

                I drove my DH's BMW to the airport and couldn't tell where the corner edges of the car are. DH was in the car. I pulled up to the curb, misjudged and caught the curb. The sound made everyone including the cops jump.

                The cops felt sorry enough for me that they didn't harrass me and the fellow behind me, who had been crowding me, backed up. I felt like I was on a horse who had just kicked in the hunt field!

                DH was really nice about it and my son checked and I didn't destroy the car.
                Intermediate Riding Skills

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                • Original Poster

                  #28
                  Hey, I never thought about that --- maybe the overcompensation of my eyes is making my brain tired, hence the other problems --- it does make sense. If it's something this simple --- well, not exactly simple, but relatively, and a lot better than the alternatives --- I'd be delighted. I'm keeping my fingers crossed, too --- as well as my toes, but NOT my eyes! :-)

                  Comment


                  • #29
                    Donkaloosa - did you ever get a diagnosis?

                    I'm getting blood pulled for MG tomorrow...

                    Comment


                    • #30
                      Any of you myesthenia gravis folks still hanging around this forum? I have it. I am still trying to ride. I did have an accident due to sudden weakness, but I am hanging in there.

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                      • #31
                        I too would like to read some updates, hope all thus affected are coping. I wonder if MG correlates with a person havjng a greater than average need for, or a deficiency of Co Enzyme Q10? If ever I can find some time to do some search engine searching, that is one thing that occurs to me as one possible nutritional supplement that might reduce symptoms?
                        Last edited by sdlbredfan; Sep. 10, 2012, 10:57 PM. Reason: typo
                        Jeanie
                        RIP Sasha, best dog ever, pictured shortly before she died, Death either by euthanasia or natural causes is only the end of the animal inhabiting its body; I believe the spirit lives on.

                        Comment

                        • Original Poster

                          #32
                          I'm still here, with no diagnosis of anything (other than being nuttier than a fruitcake). :-) Haven't had any major double vision in a while, but there are some things that are sometimes hard to see quite right. I'm off to the eye doctor tonight, so it will be interesting to see if my eyesight is any worse.

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                          • #33
                            I think that insanity is a common first diagnosis when you have MG. If the doctor doesn't know what it is, then you must be psycho. I have a hard time figuring out how being crazy makes your eyes go bad..........
                            Seriously, this stuff is hard to diagnose. A lot of people are diagnosed on clinical signs only because everything else is negative.

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                            • Original Poster

                              #34
                              I'm not even sure that they think MG is a possibility with me anymore. They know my eyes do wonky things, but no one can figure out WHY they do wonky things. It's really hard to not know why your eyes do particular things on such a random basis. I'm grateful that I haven't had any severe double-vision problems lately, but it's always there that it can happen again at any time, or you might have one of the minor problems (for me, it's usually difficult to read the big lighted number signs at gas stations that list the prices --- huge numbers that can be read from a big distance, but my eyes do not like to focus on them and usually see them blurred at any distance). They did rule out brain tumor and said that I do have a brain (yeah!), so that's some consolation.

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                              • #35
                                I am seronegative, but a neurologist, two ophthalmologists, and a general practitioner all agree that I have it. I am taking pyridostigmine, and it does help.

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                                • Original Poster

                                  #36
                                  I took pyridostigmine (I think that's what it was) for awhile, and it didn't make any difference --- didn't lessen the problems I was having seeing, didn't make them worse. They decided after awhile that since it hadn't made things better, that I probably didn't have MG. The eye doctor today is still puzzled by the whole thing, nothing quite adds up --- but you know, a few years down the road if they suddenly decide I do have MG, I won't be the least surprised.

                                  Comment


                                  • #37
                                    If you had MG, the pyridostigmine would probably have helped. I hope that your vision gets better.

                                    I have vision problems as well as generalized weakness with my MG. I will be rocking along ok, and then it will be like I got shot with a poison dart arrow. I just have muscle groups that give out.

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