Intestinal problem Newest Updates and Some Answers
Posted Nov 03 2009 10:02pm
I know it has been awhile since my last update about the testing for the intestinal problems. However, this is how long it takes to get most of the results back. So I think I left off with telling you that my full "body cavity" tests came back normal. My GI Specialist had said he felt we should remove 80-90% of the large intestine. He referred me to a Specialist in Chicago at UIC Hospital and she was awesome. She said that there was a chance that she would agree with my Specialist but felt there were more tests that needed to be done first. Her opinion was that if they remove it then they can't replace it. She felt that we should exhaust all options first.
She started me on 2 steroids. Not normal steroids that we take for MS. They were steroids that were only going to help the intestines. I noticed a difference about 4 days later. The changes I noticed was that I could breath better (not so much pressure in the upper chest area) and some of the bloating went down. I had 8 different blood tests taken for all sorts of test. Along with a Nuclear White Blood Scan. It was weird but interesting. They removed a huge amount of blood and took the white cells out and added radiation to them and then inserted them into me. Then they took scans. I noticed the nurse acting a little different while the scans was being done and I was very nervous. Then she said I needed to come back the next day for some more scans. Then I waited for results to come in. Waiting is something I am not good at. I was getting very impatient especially once I knew that most of the results had come in but that my GI Specialist "was not comfortable" giving me the results and that I would have to wait for the Specialist in Chicago to call me.
Well, She called me about an hour ago and said that my Nuclear scan showed Inflammatory disease in the entire left side of my colon. the blood work so far was all normal but still waiting on these 2 last blood tests. I asked her what this meant. She said that it could be a very rare case of Crohn's but that she doesn't think that is it. She said the tests will tell her the answer. She believes that either it is 2 different autoimmune diseases going on or it is the MS causing this. I asked her where we go from here and she said that if the test concludes that it is autoimmune, there will no way to determine if it is the MS or another autoimmune disease so her answer would be to stay on the steroids and switch to Tysabri.
I do know a little about Tysabri but only from some of my fellow MS'er friends that I have met on here. The Specialist said that if it is the MS then it would prove that the MS is progressing or may have jumped to Progressive MS instead of Relapsing Remitting. Which with some of the other issues I have had going on that would make sense. If it is 2 different autoimmune diseases then the answer would still be the same...Needing stronger medications. So probably by the end of this week I should have more answers but I promised to keep everyone informed as I found things out.
It's funny... Part of me is excited that we are close to an answer and treatment and yet the other part of me is thinking... Holy Shit I may have 2 diseases going on. I am trying to ignore that part and thinking it is the MS and that it has progressed. I kind of knew this was going on but I wanted to get the stomach issue fixed before I went to see the Neurologist about the MS issues I am having. Can you believe it... The other day I got lost in my own basement! My brain misfired on me, I guess. I could not figure out how to get out of the basement. As funny as it was that also was scary to me.