Myoclonic movement in Tongue and Face - Bob, please help

[irishmini22]

15 months ago,I felt sick; recurrent headaches, chronic fatigue, low energy, sleeping alot and stress. 3 months later, I woke up and my tongue was tremoring and my face was twitching.It is continual, especially throughout the night. have had several MRI's, CT scans, PET scan, EMG, EKG, EEG, 2 spinal taps, Movement Disorder Studies, blood/urine tests (for various diseases, cancers, hormonal conditions, metabolic conditions, etc). We also tried a five day IV of steroids - which did not reveal any changes. The only results that appeared abnormal, was my Spinal Tap, in which my CRP was slightly elevated. We know that the 7th and 12th cranial nerve are being effected, but we do not know the cause. I have been video taped and passed along to other doctors and have participated in case studies.I have tried various medications to suppress the tremor, including Klonopin, Neurontin, Clonopin, Lorazpam, Keppra; and most recently, a Botox injection; nothing has helped. The tremor never stops and is the worst at night and has interrupted my sleeping for over a year now. I have worked with doctors at Mayo & Johns Hopkins and I am told that I am 1 in 100,000,000 and that is so hard to hear. Has anyone seen this?

[BobbHilton]

Hi,
    Though hearing Mayo & Johns Hopkins , will make any neurologist stop thinking for any possible addition to your case..but it striks me that still its not clear to you if it is a myoclonus or a tremor (u used both names) is there  a palat or throat involvement  ..they are not only phenominologically different but also  therapeutic wise ...so which one your case is? any thoughts about the sickness before this (the viral like episode)  meaning any body thought of an auto immune process?.. how old are you,back ground, smoking,  any prior meds, head trauma, any lose of weight/appetite..try to type in more details and also the meds you used (if any is left out)

   Bob Hilton
    

[irishmini22]

Hi Bob,
Thank you for writing back. You are very right - most people hear who I have been working with and are scared to even talk to me. I am 26 right now, and this began just after turning 25. In asnwering your questions: I do not smoke. When I was sick for the summer, my doctor put me on Celexa thinking I may be fatigued and emotional from depression. I was on this for three months when the myoclonus started. I weaned off Celexa right away and the doctors have ruled out this as a cause. Prior to this, I was on Zoloft for alittle while through college, three years prior, but that is about it. They have looked into autoimmune possibilities and I have gone through a five day steroid infusion without any response. I wieghed 104 lbs when this first started and lost 12 pounds the first three months. I have been trying to gain the wieght back for a year and am finally back at the wieght I used to be at. My diagnosis at this time is palatal/facial myoclonus with an unknown etiolgoy. I was on the birth control, which I have been taken off of in case there is a possibility I suffered a very small stroke. I have not had any head trauma before and was very healthy, active and energetic before this all began. Meds I have used to help with the mycolonus have been Klonopin, Neurontin, Clonopin, Lorazpam, Keppra and Benedryl (to help me sleep). The twitching movement continues 24 hours a day and interrupts my speel the most.
At this point, they have a few ideas - an autoimmune disease that has caused very rare neurological symptoms, a metabolic condition, a very rare form of hemi-facial spasms (although my EMG has showed nerve communication on both sides of my face, although you can only feel/see the myoclonus on the ride side of my face, but the tongue is bilateral) or that I suffered a very small stroke. They may never have the tools to really tell what happened to me. I have been tested for every kind of disease, parasite and hormonal imbalance, and nothing - everything is normal. It has been very hard. I am going to try Botox again as it has proved to be very helpful with facial myoclonus, but unfortunately, we cannot paralyze the tongue muscle. We are going to meet with a Epilespy Specialist in about a month for the possibility of placing a Vagal Nerve Stimulator to help with the tremors - this would be a long shot and something that has never been implanted for someone with a movement disorder.
Does this help? Any other q's, just let me know. Thank you so much Bob.

[irishmini22]

Hi Bob,

One more thing I should add is that I have very very horrible migraine headaches. They relate this to  the constant myoclonic movement which is very tiring on my face. Often times, the tension pushes into full blown migraines. I have tried acupuncture and a chiropractor. They have helped a little, but not much.

[BobbHilton]

You are welcome,
     Whenever a full and exhusting  investigations ruled out a sructural lesion we should look for a biochemical one..and the negative search for  common presentations  (symptomes) of rare diseases  should direct us to a rare presentation of common disease (we say common diseases are common)
So, few Qs:
1- I did not see any mention of Wilson disease? in any hyperkinetic movement disorder esp in a younge, its should be excluded!!!
2- Any body thought of Neuroacathocytosis? a specially handeled blood sample is required for peripheral smear?
3- Vitamine E and Magnesium?
4- Celiac disease in association with weight loss?
5- Did you have/ or was it possible to get  Jerk-locked back averaging EEG?

    Could you please answer in a new post, because its hard to find the old ones with these so many new posts

    Bob Hilton

[gabriel71]

Neurology 2001;57:1707-1708
© 2001 American Academy of Neurology
Brief Communications
Persistent facial myokymia associated with K+ channel antibodies
Ludwig Gutmann, MD, John G. Tellers, MD and Steven Vernino, MD

From the Department of Neurology (Drs. Gutmann and Tellers), West Virginia University, Morgantown; and Department of Neurology (Dr. Vernino), Mayo Clinic, Rochester, MN.

Address correspondence and reprint requests to Dr. L. Gutmann, Department of Neurology, Robert C. Byrd Health Sciences Center, West Virginia University, Morgantown, WV 26506; e-mail: ***@****

A 58-year-old woman developed bilateral facial myokymia in 1978, persisting for the next 23 years and associated with high titers of voltage-gated K+ channel (VGKC) antibodies. Brain imaging failed to show a pontine lesion. The clinical facial myokymia and electromyographic doublets and multiplets (43 to 250 Hz) were milder and more restricted than those seen in generalized neuromyotonic disorders with VGKC antibodies. This case and another reported recently represent a focal VGKC antibody syndrome.

[gabriel71]

Has Mayo tested for antibodies specific to Voltage gated potassium channels...


I have the journal should you wish to read it , post ur email address snd ill send it to you.

My gut feeling, is that you either have the above sydrome or you had a very mild encephalitic episode which resulted in sub clincal ie very mild , demylination resulting in hypomylination effecting some of your cranial nerves.

Good Luck

Gabriel

[rickco]

Hi, how's your illness? Is there any conclusion for the symptom? Seems like my mum, is also having similar sickness.

[ronda58]

My son has something similar to what you are describing, with some differences.  My son woke up Mar 07, when he was 2 weeks shy of his 16th birthday with his left hand twitching.  A week later it started on the left side of his face and tongue.  He has been to UVA, John Hopkins and the NIH.  After ruling out EPC and movment disorder, they decided that it was psychological.  It moves all day, but at night it does stop.  We've been to psychologist and psychiastrist, and also a hypmotist with no resolve, they also believe its neurological.  We have also been to an accupuncturist and chiropractor with no resolve.  We even ruled out celiac sprue disease, (his brother is positive for that) but it was negative.  He's had various blood test with the neurologist, Im not even sure what they all tested for.  His EEGs have all been normal along with several MRIs, also normal.  The nerves on his hand just jump at various rates affecting his fingers.  The left side of his face almost looks like a twitching eye nerve, but it has affected the whole side of the face.  The tounge seems to pull toward the left side, which is pulling his mouth towards the left side.  Its frustrating and difficult to see him going through this.  Have you had any answers at this time,  Any suggestions as to what else we could try?

Take care.
Ronda