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Not ALS

Posted 11-03-2011 at 01:26 PM by Jannie_M

Well, I have a semi-diagnosis. ALS has finally and definitively been taken off the table.

Te reason I have the symptoms I do is paraneoplastic syndrome. So, if they find the cancer and get rid of it before I develop any further neurological symptoms, I will not get any worse than I am right now.

If they can not find the cancer, I will continue to go down hill until they find it.

I thank everyone for their support and concern, and I continue to keep...
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Old

Stephen Hawking Disease

Posted 10-11-2011 at 05:07 PM by Jannie_M

I saw something today that made me smile.

An acquaintance I made on a neurological disorder group was recently diagnosed after a year of doctors visits, specialists, and tests.

He stated that he has been diagnosed with Stephen Hawking disease, also known as ALS. When someone said "don't you mean Lou Gherig's?" He said NOPE, he didn't want a disease that was named after a dead guy.
That was probably the most positive response to a diagnosis I had...
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Confusion and waiting

Posted 09-08-2011 at 08:58 AM by Jannie_M

Spent 4 hours traveling in flood conditions, yesterday. Apparently Johns Hopkins thought I was there to find out if I have Myasthenia Gravis. They did a single fiber EMG on my forehead, and for the THIRD time it was ruled out. They found something suspicious with it, so want more tests. They ordered a cervical spine MRI without contrast and want to see the slides from my muscle biopsy.
I had hyper-reflexes on my right side. I don't know what that means, but I am sure that I am ready to know...
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Five Days 'Til Hopkins

Posted 09-02-2011 at 02:46 PM by Jannie_M

I have been dealing with some sort of neuromuscular disorder that has been getting increasingly worse over the past 2 years. It started with fatigue and exercise intolerance, at the point in my life that I was at my most physically fit. Two neurologists have said "We know there is something wrong, we just haven't pinpointed what, you will need to see someone else."

As I wait for the next appointment, I have developed substantial twitching in various muscles, including...
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