Wellness

[Justholdingon]

My new neurologist diagnosed me with Myoclonus disorder a few months back where my former neurologist poo-pooed my symptoms when I described them to him. When trying to sleep, my right arm and leg would all of a sudden jerk upright away from my body and all the muscles would contract and shake. It was so painful and uncontrollable. This would happen every time I would enter the REM sleep cycle, so as soon as I get to this point, I would awaken with these jerks. My breathing and heart rate would be through the roof. As soon as I calm down and try to sleep, it would begin again. This would go on throughout the night. 
I've been going through numerous testing (sleep study,mri,eeg) with no answers yet.

I'd like to hear if anyone else has this disorder.

[hckynutjohn]

@Justholdingon 

Have not had this. Sleep Studies I have had 6. MRI too many to remember. No EEG.

Hopefully your new Neurologist finds the answer for you.

hckynut 🏒

[Love my grandkids]

@Justholdingon First, that's GREAT that you have a GOOD neurologist who can help you. Second, SHAME all over that jerk who poo-poohed your symptoms. Wonder how many people he endangered by his negligence. 

[SandySparkles]

@Justholdingon I am unfamiliar with this disorder, and can only imagine how distressing this has been for you!😐Hopefully, your current neurologist will soon have more answers, and can initiate an effective symptom management program for you.🤞

Happy New Year!😊

~~~All we need is LOVE💖 

[coffee drinker]

@SandySparkles Good to see you back on the boards.

[SandySparkles]

@coffee drinker Thank you! Although I am not here as often, I pop in and out and when I do, it is it nice to see kind words from posters like you.🥰

Happy New Year!🎉✨

~~~All we need is LOVE💖

[coffee drinker]

Happy New Year to you too @SandySparkles 

[KathyM23]

@Justholdingon  I have had something similar but not the same going on off and on for two years.  Mine affects the muscle in my upper left back (I do have trouble it, but this is different)  I woke up one morning with the loudest noise in my head - I jumped out of bed thinking it was the smoke alarm it was that loud.  Then I went out side looking for equipment working - nothing.  It was all in my head.  At the same time I get a feeling as severe as a charlie horse in that bad muscle in my back.  When this happens it always wakes me up from a dream

After the first time this happened the noise isn't as loud as the first time and it varies in intensity.  I immediately called my Doctor's office and received a call back from them she wanted to get to the Emergency Room immediately as this could be the beginning of a stroke.  I had Cat Scan and nothing showed.

Since that time I have seen a Neurologist who referred me to a Neuro surgeon, my Ear, Nose, Throat guy who referred me to Orthopedic guy who did my shoulder.  None of whom had ever heard of this horrible noise and muscel spasm being connected to anything in my ear.  My Primary Dr said the next thing would be a sleep study.  I mention this to every Doc I have seen since including my Cardiologist and Dermotologist hoping someone has heard of this being connect to head/ear noise - it is a mystery.

I have never heard the term Myoclonus before reading your post and I looked it up.  Seems like what is happening to me is some form of this, but the odd thing out is the noise in my head or ear or wherever it comes from.  That was never mentioned.