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Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS). |
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08-16-2008, 03:30 AM | #1 | ||
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Hi I am brand new to this site and I am so glad to have found somewhere to begin my search for support and God willing (hopefully) find someone else who has my conditions. I have Palatal Myoclonus (1 in 2 million people) and Spinal Myoclonus (1 in 3 million people). In very quick definition (it is a long definition so "in a nut shell") Palatal Myoclonus (I have had for 5 years- starts in the 30s- got when I was 31) results in constant ear popping as the eustation tube spasms across the palate of my mouth which results in anywhere from 5 pops per minute to 15 pops per minute to 35 pops per minute to even up to 72 pops per minute! March 2007 we thought it had spread into my neck etc, however Stanford diagnosed my second type of myoclonus - Spinal Myoclonus. This results constant and involuntary spasms of my arms, shoulders, neck, back, stomach etc. Anyhow, these myoclonus conditions have been very challenging and it was devasting to me. I am pulling through these conditions with my head held high (smiles- finally) and I am determined to just do the best I can with what I have been dealt. IF YOU OR ANYONE YOU KNOW HAS SPINAL MYOCLONUS OR PALATAL MYOCLONUS PLEASE WRITE ME. I WOULD BE EXTREMELY GREATFUL TO FINALLY TALK WITH SOMEONE WITH THESE CONDITIONS. Thank you and best of luck to everyone. Topsie
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"Thanks for this!" says: | americaninberlin88 (10-22-2012), casrel (06-24-2010) |
08-23-2008, 12:40 AM | #2 | ||
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Hi Topsie, I also have palatal myoclonus. It was diagnosed by nasoendoscopy as palatal and pharyngeal myoclonus.
I believe I also have it in the larynx and oesophagus (it spasms on its own). The myoclonus was clearly visible on vidoefluroscopy (done to check for dysphagia)...which I also have to some degree on the right side. My palatal myoclonus is clearly visible whether mouth opened or closed (twitching constant in throat etc). Over a period of years if these get bad, I've gotten major cramps R side facial and R throat/neck area. It burns and cramps and I'm out laying on my left side with ice flannel towels applied to these areas. I believe that that the oesophageal-stomach junction cramps/spasms and burns with the pain going right thru to the back. It is so difficult when I move my arms it makes the palatal & other myoclonus worse. What are you taking for it? How was it caused? cheers burnmyo |
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04-18-2009, 01:36 PM | #3 | ||
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08-01-2012, 01:01 PM | #4 | ||
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05-17-2009, 02:43 PM | #5 | ||
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I am 35, with 2 young kids, and I have palatal myoclonus. I understand your sadness. I have had for 15 years and it is getting worse.... I am going to start on antiseizure meds, but I heard there are Doctors in Turkey treating this with radiofrequency. I would love to talk to you to see if you have had any relief since posting in 2008. Take care |
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08-24-2012, 09:25 PM | #6 | ||
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07-07-2009, 07:14 PM | #7 | ||
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I have been diagnosed as having segmental myoclonus. One neurologist said it was spinal myoclonus. I beblieve this started about 18 months ago with neck surgery. I ended up with a real bad case of MRSA. The wound had to be re-opened and all the hardware removed. The wound was left open and I had to take antibiotics intravenously for 3 months. One neurologist tried to treat it with medication and I am now waiting on an appointment to see another specialist. Anyone have any ideas about this.
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09-16-2012, 01:18 PM | #8 | ||
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10-22-2012, 08:19 AM | #9 | ||
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Hi! I also have palatal myoclonus. I had an MRI today and they found that my basal artery is curved and pushes on the nerve that controls my tongue, soft palate and throat. It is a birth defect and unfortunately, nothing can be done for it. Has anyone had any successful with medication to help the tremor? I have ear tubes and the noise is much louder than it used to be. I've had the clicking from the palatal myoclonus all my life, but just realized how bad it is when I had the tubes put in this past August. Any help would be great!
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01-06-2013, 05:41 PM | #10 | ||
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I was diagnosed with spinal myoclonus in September. I was in two car accidents a year ago, so I'm sure this is what caused the problem. I guess those of us who have this should feel special because from what I've heard it's a very rare movement disorder. I have made progress, but I live with involuntary movements. I move a lot when I feel sad for someone or when I laugh. I'm quite the entertainment for people. I am thankful to God that I am not paralyzed.
It was suggested to me by my primary care doctor to take bacopa and/or ashwagandha. Bacopa sort of helped at the beginning, but I haven't made any further progress. I am choosing to live my life without medication. Maybe those herbal remedies will help someone. |
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