Greetings, all. Obviously I'm here because I've had a number of symptoms which may or may not be explained by MS. I'm a single mom, so my health is key to the well being of my children, economic and otherwise.
I was a marathoner who suddenly became unable to run 2 miles 2 weeks after having completed a second marathon in a 5 week period in spring of 2012. I had double vision and fatiguable weakness and so was diagnosed with Myasthenia gravis, which is an autoimmune disease in which antibodies attack the acetylcholine receptors at the neuromuscular junction. This was a bad diagnosis for an endurance athlete, to say the very least.
In October of 2012 I had symptoms that confused my second neurologist, and he panicked so I went to a Myasthenia gravis expert. He switched the steroid I was taking from prednisone to methylprednisolone, and I improved. I still had some fatiguable weakness, but I started having a new kind of fatigue that he didn't recognize as MG. Often times it was concurrent with MG, so things would get very confusing, but I would begin to get tired at maybe 11:00-1:00 in the day, depending on when I woke up, would become increasingly sleepy, and would sometimes fall asleep at work. Sometimes I do fall asleep at work. This fatigue is like none other I have felt but is not entirely unlike the fatigue of early pregnancy. I usually feel less fatigued though still weak once it is evening. My neuro is having a me do a sleep study to see if MG related apnea could be causing these problems.
Meanwhile, however, during a rapid diagnostic taper down of the steroids, I started having an explosion of paresthesias. History of those includes mild feeling of icy hot on shoulders, forearms, and chest intermittently for several years prior, tingling cheeks in October 2012 when I first started higher doses of steroids, a tightness I called an "icky core sensation" on my front abdomen in October, and finally zaps, tingling, and numbness that started about 6 weeks ago and landed me in the ER, where the doctor told me first that I had MS and then that I did not have MS.
I had some small foci of increased signal that listed differentials of prior injury, ischemia, or demyelinating disease on the MRI. I had been taking a dose of methylprednisolone at the equivalent of 70 mg prednisone a day, so I was unsure of how that played into suppressing anything that might be going on or not.
In any case, the paresthesia settled down to patterns which include a spot on my right foot below the shin that feels like the bone is frozen, a deep frozen feeling in my right pelvis, a frozen spot on my left hip above the buttock, a sun baking spot on my top of my left hand below the wrist, a new frozen spot on my right hand, numbness of the ball and inner heel of left foot, and numbness in fingers 4 and 5 of both hands. Oh, and some cheek coldness and infrequently a frozen feeling in my ear.
I cannot do a nice heel to toe walk the way others can, and I'm not sure how my other tests panned out. My neuro said my strength was not too bad, but my strength should be GREAT since I've been desperately doing strength training of my legs in case I can ever run again.
That's my story. I don't know if I have MS. My doctor seems inclined to revoke the MG diagnosis, though I know I have MG. I just have something else, too. I had considered Sjogren's, since I sometimes have monocular diplopia in the left eye, but I don't think my eyes are dry. My vision is variable because of the MG but maybe because of undiagnosed disease X as well.
Greetings to all. I hope to find out more about early symptoms of MS that people here have experienced. Thanks for taking the time to read this. --Elinor
I was a marathoner who suddenly became unable to run 2 miles 2 weeks after having completed a second marathon in a 5 week period in spring of 2012. I had double vision and fatiguable weakness and so was diagnosed with Myasthenia gravis, which is an autoimmune disease in which antibodies attack the acetylcholine receptors at the neuromuscular junction. This was a bad diagnosis for an endurance athlete, to say the very least.
In October of 2012 I had symptoms that confused my second neurologist, and he panicked so I went to a Myasthenia gravis expert. He switched the steroid I was taking from prednisone to methylprednisolone, and I improved. I still had some fatiguable weakness, but I started having a new kind of fatigue that he didn't recognize as MG. Often times it was concurrent with MG, so things would get very confusing, but I would begin to get tired at maybe 11:00-1:00 in the day, depending on when I woke up, would become increasingly sleepy, and would sometimes fall asleep at work. Sometimes I do fall asleep at work. This fatigue is like none other I have felt but is not entirely unlike the fatigue of early pregnancy. I usually feel less fatigued though still weak once it is evening. My neuro is having a me do a sleep study to see if MG related apnea could be causing these problems.
Meanwhile, however, during a rapid diagnostic taper down of the steroids, I started having an explosion of paresthesias. History of those includes mild feeling of icy hot on shoulders, forearms, and chest intermittently for several years prior, tingling cheeks in October 2012 when I first started higher doses of steroids, a tightness I called an "icky core sensation" on my front abdomen in October, and finally zaps, tingling, and numbness that started about 6 weeks ago and landed me in the ER, where the doctor told me first that I had MS and then that I did not have MS.
I had some small foci of increased signal that listed differentials of prior injury, ischemia, or demyelinating disease on the MRI. I had been taking a dose of methylprednisolone at the equivalent of 70 mg prednisone a day, so I was unsure of how that played into suppressing anything that might be going on or not.
In any case, the paresthesia settled down to patterns which include a spot on my right foot below the shin that feels like the bone is frozen, a deep frozen feeling in my right pelvis, a frozen spot on my left hip above the buttock, a sun baking spot on my top of my left hand below the wrist, a new frozen spot on my right hand, numbness of the ball and inner heel of left foot, and numbness in fingers 4 and 5 of both hands. Oh, and some cheek coldness and infrequently a frozen feeling in my ear.
I cannot do a nice heel to toe walk the way others can, and I'm not sure how my other tests panned out. My neuro said my strength was not too bad, but my strength should be GREAT since I've been desperately doing strength training of my legs in case I can ever run again.
That's my story. I don't know if I have MS. My doctor seems inclined to revoke the MG diagnosis, though I know I have MG. I just have something else, too. I had considered Sjogren's, since I sometimes have monocular diplopia in the left eye, but I don't think my eyes are dry. My vision is variable because of the MG but maybe because of undiagnosed disease X as well.
Greetings to all. I hope to find out more about early symptoms of MS that people here have experienced. Thanks for taking the time to read this. --Elinor
), but there are many caring people here who really do want to help.
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