Recent EMG, neurological and muscle issues

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I have been having neurological issues for some time. My neurologist had been suspecting something like MS but yesterday I had my EMG and he seemed to be thinking totally different. During the test, he asked if I had ever seen a neuromuscular specialist, which is of course what first concerned me. He continued to ask me tons of questions about the health in my parents. Much more in depth than he ever had before. After the test he told me that he thinks I have either a muscle disorder or a systemic disorder. However, he didn't give me anymore information than that. He didn't share any results of the test. He said he wanted to send off some blood work and for me to come back in a month and he should hopefully have some answers and have a treatment plan for me.

My questions is: Would he have seen a muscle disorder or systemic issue from the EMG or would this just be more of a hunch based on my symptoms kind of like MS was? I'm trying to figure out if I should have any hope in the fact that maybe we have finally figured out something and treatment really is coming (even though a little scary) or I should prepare myself that this is another hunch and I may go back and he doesn't have any answers.

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5 Replies

  • Posted

    it depends on your symptoms, I had an emg and along with my symptoms it appeared that i had a myopathy but couldnt  determine the type of myopathy, from their i was sent to a neuromuscular specalist who did another emg with the same result thinking i had a myopathy, i was then sent to have a muscle biopsy which showed that i had a core myopathy. then genetic testing to find the cause, and last week an mri to try and determine what type of core myopathy i have.
  • Posted

    Not sure what kind of symptoms you are having but I was diagnosed with a muscle disorder called Dermatomyositis. I never had the biopsy or EMG but I did have blood work that primarily diagnosed me. My rheumatologist found it and got my treatment started and that was in 2008. I took meds for about a year and since then I've only had one flare up that was bad enough I had to go back on the treatment for a short while.

  • Posted

    Hi

    I was referred to a neurologist 3 years ago and I am still waiting for some sort of diagnosis. I have had EMG which showed definite abnormalities. I have also had many MRI's and a muscle biopsy. It was looking like a muscular dystrophy but not all test results concur with this. I live in Blackpool and saw the first neurologist here. I was then referred to Manchester and now I am under the care of Newcastle Genetic Centre and a Professor there has sent my bloods to Queens Square in London. They are looking at a rare Ion Channelopathy. I had my bloods taken last July and almost 12 months later the results aren't in !! This is how long it takes I have been told. I take amitriptyline at

    night which really helps me settle to sleep. I am getting weaker so would love a diagnosis. My problems all started when I noticed my right calf had become noticeable smaller than my left.

    I hope you get quicker answers

    Regards Ellen

  • Posted

    Oh wow! So, it sounds like perhaps I shouldn't expect an answer next month as he promised?! Goodness. I was so hoping for answers finally, but am definitely used to waiting and waiting for them. I first started looking for answers in 2008 when I was 21. I had been very active and was beginning graduate school but began doing so bad that one of my supervisors actually refused to supervise me any longer for my clinical because she believed I was hurting myself by continuing to try to work. My fatigue was bad, my weakness was worse, and I ended up in a wheelchair and bed bound by 2009. They did discover an immune dificieny and began to treat that with immunoglobulin (I also received premiers of steroids at this time). I began to gather strength back and eventually...my life back. Yet, I've never been the same. Still not able to run or anything. I still have always noticed raising my hands above my head. Always been weaker than I should be.

    I eventually had to come off of the immunoglobulin as I have a clotting disorder and had clots in my lungs in 2014. They have discovered that the immunoglobulin in contraindicated for those with a clotting disorder. Since then, I have gotten weaker and weaker it seems. The neurologist is thinking that the immonoglobulin may have been helping manage a muscle disease (coupled with steroids). Even on it, I couldn't walk a long distance without becoming very weak. At work I had special accommodations on my campus so that I could work in the closest buildings.

    So, now at Easter it appeared I had a stroke like episode. There is a small spot on the MRI, but it's small enough that it lends itself to a differential diagnosis. I have had right sided weakness (coupled with the generalized weakness), difficulty articulating, drop foot when walking long distances, etc.

    He was very interested in a rash I had on my upper arms that just stopped like a line at my elbow. I typically get a rash like that on my arms, chest, and face when I become extremely tired. I also become very very foggy headed. I'm not sure what he was making of that, just that he was very interested in it.

    He did say that it's possible that hemiplegic migraines are playing some part in this (I have a strong migraine history), but if they are, he believes it is coupled with a muscle disorder or systemic issue like Lupus.

    I think the "systemic issue like Lupus" is one big thing that threw me off. I know he can see a muscle disorder on an EMG, but I'm wondering where the systemic issue like Lupus is coming from? Can Lupus cause issues that can be seen on an EMG?

    • Posted

      Hey Maegan , your response really took me back to 2008 when I was diagnosed with Dermatomyositis. I think I would have ended up in a wheelchair if my medical Dr had not sent me to a rheumatologist that took one look at the rash I had and then asked me a series of questions. The questions related to not being able to hold my arms up above my head, not able to walk for long periods of time or walking up stairs without having to sit and rest, tripping over my feet and falling, having to pull up by door arms to get out of car and etc. All of these symptoms are related to Dermatomyositis. Maybe you should look that up and see if it relates to you. I was put on 80 mg of Prednisone daily and took 6 Methotrexate every Monday for a little over a year. After 6 months of that time the Prednisone was tapered to 60, 40 and down to come off of it within that time. But my fatigue and strength got much better and was able to go to work everyday. Your CPK blood levels have to be checked every 3 months at first but now every 6 months for me. I'm not back to normal with my muscle strength but SO Much better than It was. There is another disease that goes along with it called Polymyositis too if you want to check it out. So far I don't have it but it goes hand in hand I think. Hope things get better for you soon. Sorry this is so lengthly but I wanted to help if I could. Denise

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