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Neuromuscular Disorder, any thoughts?

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scott6672
scott6672

My problem can be traced back to at least 2001/2 when I have fasciculation in my right forearm (right hand dominant).  That was pretty much it untill 2011 when I started to have pain upon exertion.  For examply the first notice was when I was mowing the lawn and after say 50' my shoulders felt that I had been at it all day long.  Another good example is where I could walk up the stairs to the second floor of my home and my legs would feel like I had run a marathon.  I would also suddenly get very tired.

About a 1-2 years ago I started to get muscle pain, not from exertion mind you but from just sitting.  This primarily was my left quad muscle.  About this past February the muscle pain (which I will now refer to as flare ups) migrated.  For several weeks the muscle pain was in my left quad as well.  Another period of flare up was in my left hip, then right hip.

The muscle fasciculations progressed as well.  They started in my right forearm, then right shoulder, then left shoulder, stomach and then whole body for about the last 18 months.  They are visible and show up on emgs.

Now for example if I were to hold one or both of my arms straight into the air they would start to shake after about 30 seconds.  I have some muscle wasting, in my right hand, right calf, left hip.  I also have periods where I have muscle pain in my ankles so getting up from a sitting position and taking the first step sometimes isn't fluid, especially after sitting for a time as the muscles are stiff.

I also have on occasion not been able to fully swallow where it has taken a second try to get food down and also liquids might go down the wrong whole while eating.  An endoscope of my throat/stomach showed everything normal.  So am left with Dysphagia (sp?) but no current cause.  It's rare but has happend.

I also can have sudden muscle cramps while chewing as well.

I am probably forgetting a host of other symptoms so my apologies in advance,

EMG's are normal aside from the fasciculations.  Muscle biopsy of left quad showed rare muscle fibers with a buildup of glycogen.

I am currently being seen by a Genetic Pathologist at the Cleveland Clinic and soon will be seeing another Neurologist (my 6th overall)

Thanks in advance.

0 likes, 3 replies

3 Replies

  • christina60471
    christina60471 scott6672

    Posted

    Hi Scott, I basically have the twitching you're describing. It all started in late 2010 when I was training for a half marathon that I eventually ran in March of 2013. My left foot and lef would feel numb and a bit shaky for no reason. It really disturbed me, but I didn't know what to do about it. Long story short, I went on a gluten free diet Spring of 2013 and found relief because in addition to the twitching in the leg, I was feeling twiches in my extremities, pain and numbness in both legs, achey joints, full foggy head and I had so much fatigue I became very frightened. It was really strange, but I found relief by eliminating wheat from my diet. It took many months to rid my kitchen of all wheat and I had to learn how to cook a new menu and cultivate different tastes, but it was all worth it. I've even eliminated sugar from by diet (largely anyway) and I can eliminate all symptoms but a few small scale twitching. I feel best on a paleo diet, but I can tolerate potatoes and rice.  I've largely eliminted dairy and beans as well as they wreak havoc with my digestion and cause gas and bloating.  It's really wheat and sugar that cause the twitching, numbness and sometimes pain in my extremities. I also notice that I get heart flutters, too. My doctor said I should have it looked at, but I've been too disorganized and chicken to make an appointment. Even when I'm eating a strict gluten free/paleo-esque diet my heart is fluttering now and then. I'm a bit worried about it. I've had a brain MRI and it was fine and I had a nerve leg test done as well. I had MS eliminated from my differntial. I think I have a gluten induced neuropathy as far as I can tell. My neurologist had no idea what I have and suggested it was all in my head. How insulting!

    Well, instead of taking a bunch of meds that cause yet more undesirable symptoms, I would try to work on your nutrition. It's amazing how much healthy nutrition will help you feel regular/normal. Also, I take 5000 IU Vitamin D and a probiotic. I forgot to tell the other people I've responded to to take a probiotic. I think there's something in our digestive track's ability to digest food that is somehow causing these very undesirable symptoms. But, again I think it's largely the food we're ingesting. I highly recommend a strict gluten free diet. It gave me my life back. I was getting really scared and depressed before I went on a gluten free diet. Then, try to eliminate sugar. You'll only feel better. (Plus, you'll look more fit-although this is a distant second in comparison with getting rid of the terrible symptoms of twitching, numbness, pins and needles, foggy head, fatigue, and achey joints!) Good luck!

  • christina60471
    christina60471 scott6672

    Posted

    Hi Scott,

    Sorry, Just a quick correction. I eventually ran the half marathon in March of 2011, not 2013. My health deteriorated too much after the marathon that I only jog a few miles at most and only once in a while. I notice that excercise makes me feel weak. And yes, I notice my ankles will hurt if I walk too much which is strange. It's a good thing I eat well because these days I don't burn off the calories with the heavy exercise I used to do. I try to excercise at least once a week, but I have to plan to have resting time the next day.  I don't like what I have because I would love to train for a triatholon, but probably never will. I have certainly learned to appreciate the gift of being alive a lot more. The more I eat well the better I feel so I'll keep doing that. Modern medicine hasn't diagnosed what I have, much less come up with a magic pill to make it all 'go away'.  Eat well and be well.

  • christina60471
    christina60471 scott6672

    Posted

    Btw, I, too get cramps easily, mainly in my left foot, where the original numbness and shaking began in late 2010. Just eat bananas and eat properly. My cramps usually will come in the middle of the night or when I flex my feet too much.

    regards

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