Does anyone have Alcohol sensitive myoclonic dystonia?

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Hi I have had Alcohol sensitive myclonic dystonia since my teenage years I'm know 39. I take clonazepam, Zoloft and gabapentin. Also I have started botox . For the past yr when I fractured my foot at work I have developed complex regional pain syndrome but things are worsening I have an nerve conduction test and ruled out large fibre nerve damage. My neurologist diognised me of small peripheral naturopathy, my feet burn and I get contact pins and needle which started in my feet and has spread up to my back, I have buzzing and vibrations all over and zapping. I'm scared I'm not going to able to work as my legs get heavy and I have to sit down. When I'm standing up the vibrations go from my feet upwards. I'm also a candidate for deep brain stimulation. Does anyone have similar symptoms? Thanks

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    How long have you taken clonzapam?  I took it for years after being incorrectly diagnosed w restless leg.  After awhile, it did nothing.  The correct diagnosis is peripheral neuropathy.  I could not tolerate Gabapentin and am now on Lyrica. I was told that there was nerve damage however, after 7 different specialists later, there are no answers to the cause.  The feet feel puffy and burn and the legs pulsate/vibrate/twitch. There is sleep deprivation due to this condition.  My constant anxiety and frustration is also a result of no answers and of course my fear that I will not be able to function at work. I totally hear ya and am at my wits end.
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    • Posted

      Hi Jan yes it is very frustrating it makes me so depressed. Having not one condition to deal with but 2 things. I didn't have these symptoms in my legs until I injured my foot. I went to a different neurologists because it was work cover and that's when he diagioned me with regional pain syndrome, then was sent to another and had a nerve conduction test and found no nerve damage but said it maybe my small nerve fibres are damage . My movement disorder clinic says it could be my myoclonic dystonia or both....confused?????? I had full blood work and tested positive in my ANA ? BUT was assured it was not a motor neuron diesese. I have taken clonazepam fort about 7 yrs. I find the gabapentin helps a little as my symptoms get worse before my next t dosage like when the medication wear off.I feel you pain.

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      Hey Bianca:  The Gabapentin is Neurontin which I had diffictuly with.  Before this, I never really had to take meds.  The Neurontin made my hands shake and created other side affects.  I'm upping the Lyrica now an hoping this will help. At least  you can be relieved that they ruled out motor neuron and that there is no nerve damage. I'm curious as to how the foot injury is related to this condition? Is the pain strictly in your legs? What about your feet? I was reading about CPRS as I never heard of it prior to your post.  It almost sounds like a fibromyalgia but it can be central as well as peripheral neuropathy. Your ANA was positive which doesn't necessarily mean you have an autoimmune disease.  Antibodies are attacking healthy protein in your body. How are you sleeping through all of this?

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      Hi Jan sorry forr the late reply. I'm not sleeping I'm so wound up and anxious all the time which makes my condition worse. I really think it is part of myclonic dystonia getting worse or maybe its the complex regional pain syndrome I really dont know I just hope that there is not another underlying issue????? rsr

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      Honestly Bianca, I've come to realize that a huge underlying issue is sleep deprivation. I'm not saying it is the cause of symptoms, but it plays a huge part towards dealing w any condition. My job is extremely stressful and it's very difficult to come home, do whatever and try to wind down prior to going to bed. Then it becomes a battle dealing w the symptoms while trying to fall asleep. Ridiculous and virtually impossible. I don't know how long you have taken clonazapam, which helps w the anxiety,  but I was told after so many years, it was no longer working. And would you believe that I was taking it for the misdiagnosed restless leg condition??!!  Perhaps your GP could suggest something else to help you sleep? Also, I also see a naturopath who has helped me tremendously w previous issues.

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