Myoclonus anyone?

[Justme912]

My last string was posted a while back when all my symptoms came back in late May.  I have constant vertigo but not necessarily the spinning room type but visually and have balance issues.  I started PT in June and it has helped the balance issues and now we are working on eye exercises to try and get my eyes to converge.

I also have polyneuropathy in both my legs and have been diagnosed with a vestibular lesion in my right ear.  I have tingling in my fingers, toes, feet and the tip of my tongue all of which come and go.  I also started having tremors which started out as sort of like a bobble head that would come on and last for about 10 minutes and then stop.

Recently the tremor has gotten worse and now its my entire torso and my hands and lasts for about an hour now.  At times it seems like it is brought on by a visual stimulas. When I try to drive the shade on the road that is cast by the trees seems to make my eyes try to focus, and focus and focus.  Its almost as its coming at me in 3D.  I can feel a sensation in my head and after my eyes are sore behind them.  Weird huh? Luckily I had a major tremor and muscle jerking in my back when I was at PT a week or so ago and my therapist video taped it.  

I was actually very happy that they taped it.  She called my Neuro and I hand walked in a copy of it on CD for him to view.  Anyway I have seen my Neuro (who is a movement disorder specialist) 3 times in the last few months, had another MRI of my brain and C Spine with/without contrast as well as a T Spine without contact and just saw him on Friday for my follow up.  All MRI's are clear.  He simply stated that I had benign Myoclonus and "sort of" essential tremor.  That I was lucky I didnt have some sort of tumor or MS.  If I did they would have shown up on the MRI.  

He was actually sort of hostile and said you have Myoclonus "this is what I'm documenting, you need to start taking Primidone to get the jerking under control.  And if you dont then you will just have to deal with the tremors and muscle jerking."  So I of course asked is it related to any of the other symptoms I am having?  He said no, along with his little documenting speach again and then said if you cant see take it up with your Optomotrist and she will have to report it to the DMV.  

I was a little taken back by how rude he was, he seemed to be much more concered when I 1st walked into his office. I just wondered if any of you had this sort of symptom.  Just seems like that the more years that pass I have yet another symptom added to the list of the rest when I go through these "episodes" - this one lasting the longest, since May 17th and nothing seems to be going away, just getting worse or more...

Thank you for your input - Hugs,
Marci

[Rachelinpain]

i have myoclonus also, diagnosed by my primary care doc who thinks i may have MS but i have been unsuccessful with neuros so i do not have a diagnosis of it, i take neurontin which seems to help a little.  i have had it in my right arm in the past but the last few months have had it sporadically in my right leg, it is very annoying for sure, especially when you are trying to sleep.  hope you get an answer soon.  hopefully the medicine you have will help with the jerking.  take care

rachel

[Justme912]

Hi
No, not Aussie, I'm in California, USA but funny - you have one there too?? Sorry :)
I'm curious as well as to what the others will say and can almost hear tem already!! LOL
I like your choice of words "those stupid tremor things" I hear you :)
Thanks for comment I needed the laugh!!
Take care,
Marci

[JemmAus]

Hi there.....unrelated to your post but related to YOU - are you Aussie? You write like "one of us". (GP and designated driver etc)

Also wondering if you are in Brisbane area, and if so, I think I know the neuro/balance disorder specialist...........

I get those stupid tremor things as well. I can't wait for the others to yell about his "you don't have lesions therefore it's not MS" comment!

Jemm, in Canberra but previously Brisbane