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Monthly shaking episodes that continue to progress
Brain & Nervous System | Last Active: Apr 13, 2023 | Replies (65)Comment receiving replies
If you have Dystonia, it's hard to diagnose!!! You need a Movement Disorder Neurologist. Only a Specialist! Not a regular neurologist, mind you, but a MOVEMENT DISORDER NEUROLOGIST. Believe you me, I wouldn't wish this disease on my worst enemy. It's a MONSTER! Yes, you can have horrific pain, headaches, muscle soreness, problem walking, balance problems, tremors, you name it! I take Klonopin which can give you brain fog but it helps. I can't live without it. I've had Selective Denervation where they cut seven nerves in my neck. It helped! Dr. Arce is the BEST! He's in Shands Hospital located in Jacksonville, FL. Don't mess with regular neurologist, only MOVEMENT DISORDER NEUROLOGIST. I had a support group for Dystonia in Savannah, and I know what I'm talking about. Plus I've attended many symposiums on Dystonia and I'm a RN. For GOD'S Sake, don't let them call you CRAZY!
Replies to "If you have Dystonia, it's hard to diagnose!!! You need a Movement Disorder Neurologist. Only a..."
omg I have had what I call internal vibrations that rarely go away, I was told its anxiety by 2 neurologist but it's not anxiety it's tremors of some kind that resemble Parkinson's the internal vibrations never go away I wake up with them and tremor like shaking hands I can't spell or add and subtract I takes 2-7 times to address a envelope correctly I have insomnia over a year and I cannot write 1/4 my hand will not do I can try and try and my hand will not do it Drs dismiss it as anxiety I had Meg nerve pinched at L5 and c5 c6 c7 I see u of m dr neurosurgeon in January long wait but hope to get help I am tired all the time babe back hip and neck pain every day nurse said looks like dystonia but Drs say anxiety and dismiss my concerns was told see a psychiatrist he and therapist said looks like nerve damage or damage from back epidural as all symptoms came after it, hoping to get answers in January this is a miserable condition my daughters dr said he thinks fibermyalgia but no test for it I can't get help or resolve I have horrible tinnitus my teeth chatter and dry eyes and cannot see at night to drive I am scared and disappointed with Drs I just want to be me and get my life back
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These are my symptoms & they've worsened over the past 6 months. Tremor, heart rate & BP increase immediately & with daily activity, brain fog, memory loss... Still no diagnosis & they referred me back to Neurologist that said I had Anxiety & Non epileptic events and he told us there was nothing he could do. What do I do? Seeing Rhuemetology, Endocrine... As well. They all are that something is definately wrong & labs & my presence confirms this. I don't want to see the same Neurologist that told us he couldn't do anything else.