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PostPosted: Mon Feb 28, 2011 11:48 am 
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Hi Everyone,

After 3 years of incredible pain I was finally diagnosed w/ a spinal cord disorder- Tethered Cord. I could not sit anymore and had bladder and numb feet issues.
I had a very successful surgery in November 2010 (the cord is moving)
Prior to my surgery I had symptoms completely go away (for 8 months), and then reappear in May 2010 with numbness in legs and toes, severe muscle knots (hundreds), face tickling and arm tingling.
I had the surgery BUT my symptoms only got worse.
I am dropping things, my hands and legs will completely go numb for 5-6 hours, the knots and stiffness are horrible- I go to massage therapy 2 times a week. Nothing helps.
I have started dropping things, not recognizing numbers, severe fatigue etc.
My neurosurgeon is baffled, he has never met anyone having upper body symptoms and he is an expert in this field. I have also spoken w/ other patients and they have none of this. Only pain and maybe leg issues.

I am now undergoing an EMG, MRI of head and neck. My simple blood work is perfect. The suspicion is MS. I am 30, born in Europe, lived in South Africa all my life... I fit the statistics etc.

Could someone please help me make sense of these muscle knots? They are so severe I go for 2 90minute sessions weekly and they can't get them out. I even have them on my toes!

Any comments and what I should push for would be appreciated. I am at a 4 year mark with this demon and I really don't see how I can go on living like this. (no dx, no treatment)


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PostPosted: Mon Feb 28, 2011 12:02 pm 
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Magnesium might help with the muscle spasms.

I take 400mg a day plus what I get from food


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PostPosted: Mon Feb 28, 2011 12:21 pm 
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Thanks for the reply... I go take magnesium. I am doing everything "right" and have been a very healthy and fit person until things went downhill even more.
Everything is fine blood work wise (chopper, B12)


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PostPosted: Mon Feb 28, 2011 12:40 pm 
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Have you tried a tens machine or one of those electro accupressure pens?
Alternatively accupuncture?


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PostPosted: Mon Feb 28, 2011 1:54 pm 
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yes, I have a tens. I have reoccurring knots head to toe, as well as numbness. I have tried everything. I am told that my symptoms are not typical of a simple detethering. The fat by my spinal cord was just snipped.

I am having the brain MRI and EMG next week. Just wondering is knots are common?
The fatigue/stiffness/numbness/burning etc.. I understand that is common.


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