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    • #15023
      Leah Leilani
      Keymaster

      Do your arms, legs, hands or feet shake because of muscle weakness and atrophy? When did you first noticed your shaking?

      The first memory I have of being concerned about my shaking hands was when I was six years old. I was sick and had taken the day off from school. My hands began to shake as I tried to paint my nails in the bathroom. This was right around the time that I started showing symptoms of Muscular Dystrophy.

    • #15035
      Tracy Myall
      Participant

      I have had arm and hand tremors since I was in my 30s but I was not diagnosed with MD until 2018 when I was 55. I now have neck tremors as well sometimes. I saw a neurologist at UCSF and he said they were not related to my MD but were Essential familial tremors. That’s interesting that you have them and they are related. I have Myofibrillar Myopathy. What type of MD do you have?

    • #15040
      Leah Leilani
      Keymaster

      I have a type of MD called Mitochondrial Myopathy. It’s a very rare form. So the doctor thinks your tremors are inherited? Are your tremors constant or only happen when your muscles are under stress?

    • #15045
      Barry Glaberman
      Participant

      I have spasms, not shaking per se, like in Parkinson. Because of this, I no longer drive. I never know when it is going to happen. It can be mild like when you get a chill or it can be violent. My wife refers to it as the bedrock twitch from the Flintstones.   It is bad that I guess we have to make lite of it.  She even says that I spasm when I am asleep. I wish I had an answer to it, but it is somehow related to the MD.

    • #15047
      Karen Atkins
      Participant

      I have FSHD and my hands starting shaking mostly when I pick up something or type. Not all the time and mostly one hand. Started about 1 year ago. Any thoughts if related to the FSHD?

    • #15051

      Sometimes when I try to reach down for something, it feels like my muscles are shaking and might give out. It has happened before, and it can be scary! I want to continue to push myself a little, but I need to be more aware of what my limits are becoming.

    • #15077
      Tracy Myall
      Participant

      My tremors come and go. I noticed that they are worse after I have been to physical therapy and my muscles are tired. And also when I am under a lot of stress. I suffer from anxiety so that doesn’t help the situation 🙁

      When I first noticed them it was in meetings at work when I would try to drink coffee out of Styrofoam cups. My hands would shake so bad the coffee would spill. So I had to use heavy cups. At this point I’m avoiding caffeine completely because it seems to make it worse. But this all started many years before my diagnosis of MD. It has now just gotten worse.

    • #15078
      Leah Leilani
      Keymaster

      Barry, the “Bedrock Twitch” is a hilarious way to refer to your spasms! I too get muscle spasms that are random that aren’t related to my muscle weakness. I’m sorry to hear that your spasms have caused you to quit driving. I’m sure that was difficult to do but I’m glad that you take your safety that seriously. Have you brought this symptom up to your doctor? I understand if you haven’t because there could be lots of tests in order to diagnose the spasms.

    • #15079
      Leah Leilani
      Keymaster

      Tracy, I think removing caffeine from your life sounds like a good plan even though it isn’t the root cause of your shaking. I have Tachycardia and my heart rate can increase to 150 bpm which can be another cause for shaking for me. I try my best to avoid caffeine as much as possible because my heart rate is already so high (consider me permanently caffeinated 😂).

    • #15080
      Leah Leilani
      Keymaster

      Yeah, bending down seems like a strenuous pose on the body for many people. It’s like when people say they feel old I’m like uh, no. Come walk (roll) in my shoes for a day. I feel so old I need a trash picker-upper for things that fall and I can’t reach 😂

    • #15102
      Pete Barron
      Participant

      My hands don’t tremble too much, but they often “forget” that they’re holding something and drop it. They don’t have much reliable feeling. I have a service dog that I have been working with for most of the last year. She already has learned how to help me up when I fall and right now we’re working on picking things up that I drop. That will be a big help because I lose a lot of things by dropping them and not knowing it and rolling on.

    • #15108
      Tracy Barhite
      Participant

      I also have muscle spasms and shaking.  I first noticed the shaking shortly before my diagnosis in 2015.   I have IBM  (inclusion body myositis) it too is a rare form of MD.  My shaking or spasms can happen in my arm’s or leg’s and usually when I am tired or I have over done it.   Stress and having a cold or sickness also affects my muscles.  My muscles can just give out at any random time which causes me to drop things or at worst to fall.  As a result I try very hard not to overwork myself.  My goal is to stay healthy and stress free.

    • #15130
      Leah Leilani
      Keymaster

      Pete, I’m sure that’ll help you so much to have your dog perform that task for you. I’m sure the training is a rigorous process but will be totally worth it.

    • #15131
      Leah Leilani
      Keymaster

      Tracy, one of the worst an most stressful things about MD is when the unexpected happens to our bodies and effects our lives. I hope that managing your health gets easier.

    • #15146
      Pete Barron
      Participant

      Leah, the dog training does take a lot of time When I’m home we go to group class twice a week, and then we work on things on our own the rest of the week. It is a lot of time, but I really enjoy having a dog for company and she is getting to where she helps me quite a bit. We have been in Mexico for the last 2 months and that has been a ton of explaining. Most people where we go have never seen a power chair never mind a service dog. The shakes I get are mostly my tongue trying to explain all this stuff in my bad Spanish!

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