Every journey starts with a single step. My journey started "officially" in March 2006. I started this blog six years into my journey, I often find myself amazed at how this disease taught me a lot....about me. I find the hot air balloons a perfect representation of my journey, with all it's ups and downs....I still soar.
Tuesday, April 28, 2009
Neuro results:
Fortunately the CT scan was negative for a tumor (Praise God). However, the neurologist thinks that I have developed to new occipital lesions which are what is causing the field of vision problems I developed this time as was as the increasing issues with the left leg. He also stated the obvious that I have been in a pretty consistent state of decline since last June that the CRABS and steroids can't seem to get control of. So, he is keeping me in the hospital through the entire 6 days of infusions and then sending me to a Rehab facility. He also wants me to go back to UCLA for a medication consult and recommendation. His preference is Tysabri, so we'll see what UCLA says. Now the research regarding the Tysabri begins.
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2 comments:
I'm so sorry !!!
I found your blog yesterday.
I sort of have ms. Been diagnosed. Went to a specialist who told me I didn't. Was put on rebif. Reacted to it. Went in a coma 3 weeks later. Woke up and have been bumping into everything off and on ever since.
I hope the new med can help you.
I'll be thinking of you ... as I did most of last night.
Hope .. and may you find some peace ...
I also posted this on my blog ...
Thanks for going to my blog. How nice of you, considering that you are so busy being in the hospital and all.
Before my coma, I was diagnosed with transverse myelitis. Have a lesion in my brain and a large one on my spine. Had steroid treatments for those. Never an over night in hospital though.
Got my ablilty to walk without looking at my feet back ... brain not telling my legs where to go .. after that.
I've had mri's and a tap ..
Dr put me on the rebif after the steroids. I never got over the flu type symptoms and three weeks later went into a coma. Due to not being able to feel that I had a bladder infection. Sepsis.
Learned to walk and talk after I woke up. I'm not on any meds at this time. I kind of gave up on Dr's ... I fall, bump into things etc.
For now, I'm doing ok. My headaches that are worse since my coma, they said are just bad Migraines. I go numb on that side all the time.
Just all part of being me.
So since I don't have ms ... just ask the Dr's .. I just have old crazy cat lady body ...
Not too worry ...
I'll be fine. I always just pick myself up and keep going.
I do hope you get better. I'll check in on your tomorrow.
Know that you've found a friend. Far away but still someone who cares. Cause it could be me and not you ... and I know it.
Like I said, may you have some Peace today ...
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