Saturday, September 6, 2008

New Information

I went for my 4th Tysabri infusion yesterday and was talking to the nurse about my side pain. I was telling her it has been 7 months and no doctor could figure it out. There are 2 more tests that could shed some light on, one is the small bowel X-ray and the next is the pill-cam test. The nurse told me to do both of the tests but if still nothing was found it could be neuropathic pain. I had never heard of this before now. She said one of my lesions in my brain could be causing this, and there was a medicine I could try. I like my neurologist but he didn't even bring this up at anytime when I was telling him about this pain. It could still be a GI problem but at least its being narrowed down. Tuesday I go in for the X-ray test.

I think I was having a relapse this last weekend. I was telling the nurse what had happened over the last month and mentioned I felt nauseous all last weekend and I was dry heaving. She asked if this had occurred before, it had and that's when she mentioned maybe it was a relapse. I though you couldn't do anything if you are on Tysabri but you can still have steroid treatments. She said if it got any worse I could come in for one. I said no that's ok I was feeling better.

That was my exciting day yesterday. I will write more on Tuesday.

Thursday, September 4, 2008

Wow Its Late.....

It's almost 12:30am and I have to be up for work in less then 5 hours. I am having a really hard time sleeping tonight, which is weird since usually I fall asleep in front of the TV. My left foot feels very strange. Usually its relatively numb and I can barely feel it. Tonight especially my last 3 toes feel very different; I am not sure how to explain the feeling, it feels similar to nerve pain. Maybe it means I am going to get more feeling in my left foot. If that does happen then I would have to say this Tysabri is working pretty well. Now if only it would get rid of this side pain.

It has been 7 months to the day of this pain, nothing has really changed; no doctor can figure it out, all they can tell me is what it is not. At this point I just want my stupid insurance to pay for the test that 2 doctors have requested. I will be off work from Friday to Wednesday, hopefully I can get the doctors to schedule the next test I need to rule out some more problems and they will be closer to finding out why my side hurts.

I am sure a lot of you are wondering why I have let this drag on for so long; well when you have to deal with lots of incompetent medical personnel who only give you part of the test results it makes finding the actual problem take twice as long. Also if you have to go to different doctors to ask for the same test because your insurance company says you don't have the symptoms to warrant the test, this also takes more time. But I am not bitter I mean who doesn't like constant pain that doesn't go away. Ever! LOL. Well I am actually feeling tired, I will write more tomorrow.