Balance Problems. Spinal birthmark, and age 30 - Vascular Birthmarks Foundation Forum
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  #1  
Old 12-14-2009, 10:35 PM
holtjm holtjm is offline
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Default Balance Problems. Spinal birthmark, and age 30

My main problem is walking and falling caused because my muscles are very weak and not getting stronger. But I also have a port wine stain on my back, my left back, and all over my left arm.

I just turned 30 and live just outside New York City. I orginally saw a doctor for back pain about 6 months ago. They thought the cause was I was not walking right, due to weak muscles, which also causes my problems with balance. I started physcial therapy, but my muscles are not getting stronger. I saw neurologists, neuromuscular specialists, and a mitochondrial specialist. They have run MRIs on my head, EEGs, EMGs, and even a muscle biopsy surgery, but cannot figure out what is wrong. They have ruled out ALS, MS, muscular dystrophy, and a number of myopathies. I now walk with crutches and they have recommended I get a power wheelchair.

At my last visit, the doctor pointed to my port wine stain and said he thought it had something to do with it. That doctor had never seen my back. Then I found this website, and specifically the part about spinal vascular lesions and starting with walking and falling problems. I do have port wine stain on my spine - about a 3" x 3" spot near the top of my back. We found a paper by Wang and Xu on medical imaging of Cobb syndrome and my back looks a lot like the picture in that article, but higher. My symptoms are consistent too.

I sent this to my doctor last night, but he's a mitochondrial neurologist, not a port wine stain specialist. From this website I saw a radiologists in New York City and a dermatologist in New Jersey, but not sure who I should contact. Any help would be appreciated. I just want to be able to walk normal again, though since it's been going on for a long time, I realize those nerves may be permanently gone.
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Old 12-14-2009, 10:39 PM
missy missy is online now
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Go to

http://birthmark.org/experts.php

and write to the founder here, Dr. Linda Shannon. She will direct you to a physician on an appropriate team. You don't need just one kind of doctor... what you need is a doctor who knows that you need more than one doctor and can (and will) work on a team.

Missy
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Old 12-15-2009, 01:57 AM
holtjm holtjm is offline
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Quote:
Originally Posted by missy View Post
Go to

http://birthmark.org/experts.php

and write to the founder here, Dr. Linda Shannon. She will direct you to a physician on an appropriate team. You don't need just one kind of doctor... what you need is a doctor who knows that you need more than one doctor and can (and will) work on a team.

Missy
I was a little shy to e-mail the founder. I did send an E-mail to Corinne yesterday. But OK, I'll send an E-mail to the founder so she can suggest who I can see that may be local to New York.
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Old 12-15-2009, 11:30 AM
missy missy is online now
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LOL I'm glad you emailed Corinne too. Bet they both send you to the same place!

Missy
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Old 12-16-2009, 06:29 AM
nickbar nickbar is offline
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yes we would. LInda's inbox is often flooded...so I am here to help. I did not receive your email though... use the email at the bottom of this message on my signature. No spaces in the email address

Please email me directly to discuss where you've been, who you would like to see etc.
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