Futurehope..did you have your EMG?

[DawnA]

Futurehope, I was wondering if you had your EMG and how it went? Did they tell you anything while they were doing it. Thinking about you!

dawna

[futurehope]

Last Wednesday, or was it Tuesday, when I got to the testing I found out I was only to have a repetitive nerve stimulation (RNS) test, not the EMG test. It turned out normally. I asked my doctor what to do now? since my AchR antibody titer was elevated and this could be indicative of myasthenia gravis. The doctor said, as long as I'm not displaying any muscle weakness, he was not going to do anything else. And I do NOT have a diagnosis of myasthenia gravis, according to him, despite my blood test results. As usual, my body performs like a mystery wrapped in an enigma. Thanks for asking.

[DawnA]

I have also had the repetitive nerve stim done to. This was to rule out Myastania Gravis. When ever I have a Dr test my muscle in the office they come out fine. That is a gross muscle test. If a PT does it , they do individual muscles and they find weakness. I have a lot of hip weakness, which does not show up the way the Drs test in the office.

How do you feel about not having another EMG? Do you want to pursue things more or wait and see what happens?

Dawn a

[Jersey Girl]

I have had a lot of hip and leg weakness on the left side since my POTS started and just today I saw an orthopedist who ordered an MRI of my left lower back. I have visible loss of muscle in the left hip area and a sensation of numbness and weakness. I had sensory evoked resonse potentials done last year which didn't show anything. I feel like I am dragging my leg when I walk sometimes, although it generally follows along. Has anyone else had this experience? The orthopedist said it was nerve damage most likely and he wanted to see the results of the MRI.

[futurehope]

Dawna, I don't know what to say other than I, myself, do not experience any weakness of any kind, except that my entire body tires easily, but that's it. So, for now, since there is no muscle weakness showing that I can see, I suppose I won't be doing anything. Remember, this entire search which culminated in the repetitive nerve stimulation was because of an elevated ACHR antibody titer. Now, if this blood test means anything and can help shed some light on all my POTS symptoms, that would be good. But it looks like my doctor is stopping at the RNS and he has decided for now not to label me with myathenia gravis.

[Reputta]

Jersey Girl I too am having trouble with muscle weakness. I had an EMG last year and blood test to rule out Myasthenia Gravis. They both came back negative. The doctor is running the blood tests again as he said sometime in the early stages of a disease the tests don't show anything and then later on they do. I also feel like I drag my feet when I walk but it's not all the time. Last month my husband and I went to a concert and my husband had to almost carry me out. I had to walk a distance to get there and then after sitting for a long time I just couldn't get my legs to work. I had another MRI last month to rule out MS which it did. I have never had an MRI of my back or neck. Do you have muscle weakness in your arms also? Do you have pain in your back or just hip?

Shari

[Jersey Girl]

I used to have pain and weakness on my entire left side that no one could explain and I was dismissed as being depressed. But my dizziness was so intense and constant that I tended to ignore the muscle weakness because I was lying down practically all the time. I was told by a few neurologist that because my right side was dominant that this was normal, but this whole weakness and feeling of numnbess has persisted (the initial intense pain has subsided somewhat). I am noticing the lopsidedness more as other issues improve. I just looked at my left forearm and it too has experienced loss of muscle mass. I have had MRI's of my neck that were normal. Sometimes after swimming I don't notice these sensations but it is short-lived. I wish I knew what happened to cause all these problems.

[DawnA]

That is interesting about the Myastania Gravis not showing up in the beggining. I will have to read more about that.

Jersey Girl: I have weakness on both sides, but my right side is more affected. I drafg my right foot and have a foot drop. Is their any weakness on the right? It is good you are having a lower spine MRI. Have you had an nerve conduction study done? This would indicate if their is a problem with nerves. My nerve conduction study was normal. I do have a nerve problem, but it is in the small fibers, which does not show up in this study. My EMG showed myopathic changes.

Futurehope , this makes sense. I hope your problem is viral in nature and it goes away. If it is MG that can go away, I think.

best Wishes, dawn A

[futurehope]

Dawna, I had read a bit on the internet about MG, and it can go into remission, and I guess, in some people, it can "go away", but I don't know if that means "forever" or what? Also, when you have a disease and you are not displaying symptoms, my doctor used the word "subclinical", meaning, you are not displaying the outward signs.

[Jersey Girl]

DawnA, I also have some spasm and weakness of the right shoulder muscle but it might be related to a calicification that is located on my superspinatus muscle insert. But for the first few months of the POTS starting over 2 years ago most of my musculoskeletal symptoms were confined to the left side. I kept telling the doctors that I felt weakness of the left side and they said I was depressed because I could move my arms and legs. One incompetent neurologist said "I am not impressed by weakness," whatever that means. I am also hyper-reflexive on the left side and have a left facial palsy that has improved over time. An EMG was attempted on my left arm last summer but it was so painful that it couldn't be completed.

[DawnA]

That old blame in on depression diagnosis. I hate that. I hope your MRI of your lower spine gives you an answer. Good Luck! Dawn