Syrinx and Spinal Myoclonus?

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Syrinx and Spinal Myoclonus?

Postby spinaltwitch » Mon Jan 30, 2012 9:30 am

Hi,
New here. My doctor recently diagnosed me with Spinal Myoclonus and believes it might be related to the syrinx that I have (T2-T9). Was wondering if anyone has heard of this or has any experience.
Right now I'm on 800 mg of Tegretol and he is adding Keppra to the mix.

Also, if anyone has any recommendations for headaches that would be wonderful.
Thank you and have a wonderful day :)
spinaltwitch
 
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Re: Syrinx and Spinal Myoclonus?

Postby gunflint » Mon Jan 30, 2012 12:46 pm

Welcome,
I had to look up Myoclonus but then I could have just looked at your username. I'm just curious if your syrinx was recently found our if you've had it for a while. I have a constant headache and have had for a couple of years. Luckily 600 mgs of ibuprofen usually takes care of the problem. Good luck.
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Re: Syrinx and Spinal Myoclonus?

Postby spinaltwitch » Mon Jan 30, 2012 1:48 pm

gunflint wrote:Welcome,
I had to look up Myoclonus but then I could have just looked at your username. I'm just curious if your syrinx was recently found our if you've had it for a while. I have a constant headache and have had for a couple of years. Luckily 600 mgs of ibuprofen usually takes care of the problem. Good luck.


Hi,
They found the syrinx in 2006, but thought that it was congenital and unrelated to the muscle movements. Now they believe that it is related (different neurologist).
Thanks for the advice on the ibuprofen.
spinaltwitch
 
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Re: Syrinx and Spinal Myoclonus?

Postby gunflint » Mon Jan 30, 2012 2:27 pm

That ibuprofen remedy works for me I hope that it work for you. I hope that your new neurologist specializes in SM. If not, I strongly recommend that you find a neurosurgeon that does. It can make all the difference in the world.
gunflint
 
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Re: Syrinx and Spinal Myoclonus?

Postby karenb » Tue Jan 31, 2012 11:35 pm

Hi All,

My syrinx in T6-T9, width 3 mm. It occurs at the maximum point of flexion for my scoliosis...

Anyway, I have been experiencing Myoclonus or Myclonus-like jerks for 4-1/2 years or so. Whe it happens, it's generally not just one jerk, but several. Sometimes it feels and appears like a seizure, except I can talk and react and stuff.

Usually what happens is that my lower body, from the waist down, becomes stiff & rigid and shakes a lot. My upper body sometimes becomes rigid (to support myself - for example, if it happens in the pool). Other times, I just make myself comfortable until it passes.

It never (at least to my knowledge) happened to me until August 2007, just 3 nights before I was dx'd. It wasn't true myoclonus (which I saw in my mother during her death), but more "Myoclonus-like". I've had it dozens of times, and have even nearly drowned because of it.

Karen

FYI, the doctors who have seen this happen seem to think it's not neurological or related to SM - many act as if I'm making it up. I swear that I am not, but they insist I'm making it. I challenge any of them to actually experience an episode with me one-on-one - only then they might understand what's happening.
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