undiagnosed movement disorder

I think we do suffer some similar symptoms and the one that no one else ever had is the total loss of long term memory! Mine came on after I had been in protracted withdrawal for 4 years ,so strange and it’s devastated me as not only does it take away my past,it tells me something happened to cause it and my neurologist is a waste of time as he has no answers plus he did 2 MRI’s ! Any info you can provide could help greatly. Head pressure and muscle tension of shoulder and back plus tinnitus round out my issues. Thanks for getting back to me and hope we can help each other!

Wow! Your symptoms come closest to mine as I have ever read. In a span of 7 years I had 3 concussions with the last leaving me without a memory of falling, knocked out for about 5 minutes, postconcussion headaches, followed by a body wide increase in muscle contractions that started after my 2nd concussion, and then essential myoclonus. This has been going on since 1999. I take klonopin for the myoclonus. My muscles are tight but when I have an episode, generally started by someone touching or injecting around my right shoulder area, contortion is a good word for a description of the visual. Just had a bout at pain management that lasted over an hour. Time is all that helps resolve it as I am allergic to so many meds. I have been told they are all in my head and I am anxious. I deny either, well I 'm pretty sure the head injuries are responsible but that's not what they mean when they say all in my head. I find both myoclonus and sustained contractures exhausting and moderately painful compared to my other pain issues.

Wow! Your symptoms come closest to mine as I have ever read. In a span of 7 years I had 3 concussions with the last leaving me without a memory of falling, knocked out for about 5 minutes, postconcussion headaches, followed by a body wide increase in muscle contractions that started after my 2nd concussion, and then essential myoclonus. This has been going on since 1999. I take klonopin for the myoclonus. My muscles are tight but when I have an episode, generally started by someone touching or injecting around my right shoulder area, contortion is a good word for a description of the visual. Just had a bout at pain management that lasted over an hour. Time is all that helps resolve it as I am allergic to so many meds. I have been told they are all in my head and I am anxious. I deny either, well I 'm pretty sure the head injuries are responsible but that's not what they mean when they say all in my head. I find both myoclonus and sustained contractures exhausting and moderately painful compared to my other pain issues.

I understand your frustration a lot. Hang in there! Its a long journey......

Hi @birdierobin I'm currently waiting for word from Cleveland clinic regarding an appointment with a neuromuscular specialist. My current dr. has been diligent but unable to pinpoint a cause for my symptoms. And the baclofen only helps marginally regarding the muscle spasticity. I'm beginning to have pain in my feet and ankles due to the contraction of my toes and arching feet. Are you on medications for Parkinson's?

Normal Pressure Hydrocephalus | Patricia's Story
Johns Hopkins Medicine
After 18 frustrating months of going undiagnosed for balance and memory problems and bladder issues, Delaware resident Patricia finally learned she had normal pressure hydrocephalus from neurologist Abhay Moghekar from the Johns Hopkins Cerebral Fluid Center.
Hear about her new appreciation for life following her shunt surgery and rehabilitation.
Visit us: http://www.hopkinsmedicine.org/neurology

Hi everyone, currently unable to sleep well so I thought I'd post an update. I have finished my iron infusion and unfortunately have not noticed any difference in my muscle symptoms and general fatigue. I have an appointment this Friday with a hematologist. I have an upcoming appointment at Cleveland with a neuromuscular specialist. We have much to discuss as my symptoms have become much more severe. I'm experiencing constant muscle contracture in my feet, and full body muscle spasms that prevent me from standing/ walking. Muscle weakness and fatigue from the spasticity is worse. Does anyone have symptoms of spasticity? How do you manage in terms of mobility and daily living?

Hello @beth11,
I appreciate hearing from you and providing an update. I am sorry to hear that you have yet to find an answer or any relief from your symptoms. I hope that your appointment on Friday is helpful.
Will you post an update after that appointment?

Hi everyone, currently unable to sleep well so I thought I'd post an update. I have finished my iron infusion and unfortunately have not noticed any difference in my muscle symptoms and general fatigue. I have an appointment this Friday with a hematologist. I have an upcoming appointment at Cleveland with a neuromuscular specialist. We have much to discuss as my symptoms have become much more severe. I'm experiencing constant muscle contracture in my feet, and full body muscle spasms that prevent me from standing/ walking. Muscle weakness and fatigue from the spasticity is worse. Does anyone have symptoms of spasticity? How do you manage in terms of mobility and daily living?