Bob Hilton, reply to questions - yes it is brainstem myoclonus

Hi Bob,
I know it is hard to looks through past posts, so here are the reponses to your recent questions:

C3  REPLY BACK TO BOB HILTON Hi Bob,

In respose to your post, yes, it is brainstem myoclonus. They know that the 7th and 12th cranial nerves are affected, but not sure why and what caused it. I am checking with my dr for the particular muscles that were injected, but they injected the Botox into five different places. The four corners of my mouth (above right side of mouth, above left side, below right side, and below left side) as well as the right side, high cheek bone, almost near my eye. The pulling of the twitching is visually on the right side, but they wated the Botox to be as symmetric as possible. The EMG shows nerve communicaiton on both sides of my face as well (which is what rules out hemifacial spasms - I have met with a few neurosurgeons).

I know very little about the vagal nerve stimulator. We have a consult scheduled next month to just talk about the possibility. It is not likely. I will definately know more after this appointment - I only know what I have been able to research online.

I also have an email in to my dr to check on the other tests you inquired about. I have had several MRI's and some 3-T MRI scans. Everything has shown completely normal, with the exception of small nerve fibers, but nothing they can relate to a cause.

We have also looked at environmental factors (chemicals, formeldahyde, etc). My husband and I puchased a new construction townhome, so last summer, we moved in with my parents for a month to see if I was possibly having any reactions to carpet glues, paint, anything that could have been used to build our home. Unfortunately, no change. I feel like we are completely stuck. There is nothing to test for anymore, and everything is experimental at this point.

Thank you, Shannon

[BobbHilton]

Dear Shannon,
     Although english is an issue with me, but I would like to tell that an illness /disease/ physical problem should always be in the body part and never let it cross to the soul!! Based on scientific facts, that chemical changes in our body (big part of it emotional/soul) has a big influence on the illness ...I have seen strong people beat the odds and come out victorous (esp women, maybe because you guys have much more patience than us?) ..so the first and last thing to remember is keep a positive thought , that this would be a temporary event and it will go away esp knowing that neurology has progressed so fast since the 1990 and its keeping the progress very fast
    Back to your post
1-  So they injected the muscles innervated by the Buccal , and Mandibular branch of the facial nerve (botox usually diffuses in areas of small muscles)
2-  I asked you about the other meds you used so far and the doses and if any side effects on any of them .

3- if you did not have PET  (positron emission tomography scanning looking for hypermetabolism of the inferior olive) , or Functional MRI looking for neuronal activation bilaterally in the putamen ( an area in the basal ganglia in the brain).
Then I recommend asking your neurologist about them since they still detect an abnormaly...as I said your codition stays while you are asleep so its more toward a secondary cause , but we are unable to identify it yet

4- About Vag nerve stimulation (I was never a friend to any surgical procedure unless I tried every possible medical option)...it was used to treat Epilepsy in the late 1800s , then vanished after the meds came up...in 1950s it came back but used in animals for ~ 30 years with good results
Human trials began in ~1989 or 1988  and in 1997 got approved In the state for focal epilepsy if faild therapy and older than 12 years ..later on , 2 years ago,  got approved for resistant depression. But, its use extended beyond just the 2 indications (e.g migraine, chronic pain...ext)..but all I have about its use in myoclonus  is  a couple of 6-7 years articles , they are not a brainstem type ..while the exact mechanism is still unkwon, but a colleague told me  at a lunch/CME lecture about a publication  from Glasgow , UK talking about an effect on the brainstem...I will try to get it and update you

   Bob

[irishmini22]

HI Bob,

Thank you for those kind words. I will never give up, I know this, but some days I feel defeated. I do believe we will find the cause to this.

I have had the PET and MRI scans you indicated. The meds that I used varied in side effects, but included drowsiness, fatigue, dizziness, extremely dry mouth, racing heart, light headed and feeling out of it. Most of all, none of them helped in a way in which I felt the side effects outweighed the medication effetcs.

I would really like to read that journal about the Vagal Nerve Stimulator if you can find it.
Thank you so much.