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Time rolls on .... diagnoses change and evolve.

Posted Dec 10 2011 3:08pm
I am at the point of diagnostic dilemma. Over 10 years into my "MS Journey" and life is showing that, according to 3 current neurologists, I don't seem to have MS at all. My brain MRI's have been too clean and my spinal cord c-spine and t-spine have been clear as well.

Blessing yes .... confusing .... definitely.

It's much easier to be lumped and labeled and treated that way. I've always been treated for fatigue, pain, "exacerbations" and what not. This blog has been a chronicle of a lot of it. Much of it is sensory ... much neurological. Hard to fit into a category anymore.

One neurologist told me one of the best indicators is time. I've been tested up and down (and sideways) for all kinds of things from autoimmune to rheumatoid types of diseases. Strange stuff.

Here's what I know:

- I have fibromyalgia which can explain the extreme fatigue, pain, cognitive problems, mood issues, sleep problems and maybe some other stuff too ...

- I have no thyroid anymore and balancing that is difficult. I now have moderate cardiomegaly (enlarged heart) and that is being followed. Why? Don't know yet.

- I have had a complete hysterectomy for endometriosis. I am in full-on menopause. Oh joy.

- I have a completely neurogenic bladder treated with Botox. I catheterize 7X a day. Not sure why I have a neurogenic bladder. Spinal cord injury from my motorcycle accident maybe? Endometriosis? Don't know, don't care.

I have not been on Copaxone since May 2011 and I don't really notice much difference. I have the enlarged heart and had to visit the ER for chest pains (they discovered Cardiomegaly on chest x-ray on November 15, 2011). Who knows why?

I am happy my MRI's are clear. In my mind, I guess I don't have to live with the specter of growing progressively immobile because of this disease anymore. I still can't work - it doesn't seem to change my intolerance for heat and extreme cold or my fatigue levels and pain. But I guess I don't have to live with that label anymore. The label of "MS" was easy for me - it explained everything.

Adjustment to "life" takes time and I am not sure what the future holds for me. I'll embrace it the best I can and hope my "ticker" is just a strange anomaly and not anything crazy. My endocrinologist wants me to go to http://www.cornellcardiology.com/ for in-depth diagnosis and consult. The VAMC does not seem to have a good grasp on this one.

Time marches on. 2012, here I come!
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