Tuesday, May 29, 2012

Another Curve in the Wild Ride

By KJ Monday, July 27, 2009

I'm still in limbo waiting for a diagnosis or, maybe more correctly, waiting for the doctors to "disprove MS". I have multiple symptoms. I've been diagnosed with intention tremor, have cognitive problems, bladder problems, visual disturbances, double vision, twitches, facial pain, and a host of less serious strangeness going on with my body. I also have white matter lesions that are either "disturbing" or "normal in size and number" for my age (I'm a 48 year old man) depending on which doctor I talk to. At the same time the lesions were discovered, a large "growth" was found in the orbit of my left eye and my neurologist has said that she didn't want to schedule any more neurological tests until the eye problem was figured out since it might play a role in some of my symptoms.

 

Well today I finally got in to see an eye surgeon and her assistant regarding the eye problem. The eye doctors agree that most of my symptoms have nothing to do with the tumor. One thinks removal of the tumor will help with the double vision, the other doesn't think it will change that. They both want to remove the marble sized thing from my head and do a biopsy to find out how bad it is. Both eye doctors want me to continue to pursue a neurological cause for my multiple symptoms. They showed me a picture of a large bright lesion in my brain and one said that it is "two frames" to the left of where MS related lesions are usually observed, but it is very big and very bright under the enhancing dye. Don't ask me how big a "frame" is.

 

The surgery is scheduled for next Monday and I hope to schedule a lumbar puncture sometime shortly after that. Am I getting closer to a diagnosis of MS or just making another big limbo circle? Time will tell.

Still Not Diagnosed, But Receiving Disability
8/ 8/09 3:52pm

Wow, hang in there.  You will be in my prayers.  When I was dxed my MRI showed a mass in the center of my brain.  Fortunately for me the mass did not affect my eyes so no surgery was called for.   A year later my MRI showed no mass at all. No one could explain what it was or where it went.  I always thought it was a cyst.   I do wish you well.

8/12/09 6:06pm

Thanks for the prayers, they must have worked. The surgeon removed a large "watery cyst" last Monday. It was bigger than expected but completely benign. Now that that's taken care of, I can get on with so many other things.

 

Thanks again,

KJ

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By KJ— Last Modified: 12/19/10, First Published: 07/27/09