Search This Blog

Thursday, December 11, 2008

And so it begins...

Well everyone, Dave suggested that I start a blog about my experience rather than continuing to email everyone. (I know, it was Dave's idea...who knew he was computer savvy :) ) This way I don't feel like I am bugging anyone or subjecting anyone to details they don't really care about. So if you are here, you must be interested. <>

Back in 2007 I started having some dizziness and loss of balance. I explained it away from lack of eating to breastfeeding (2006). As I started having issues with my stomach, I thought my Crohns disease was out of remission. After a colonoscopy in January of 2008, I found out not only was it not out of remission, but I didn't have Crohns disease anymore. I never knew it could just go away, but my GI specialist said it can. Good news there, but no answers to the stomach problems, except irritable bowel syndrome, yipee. <>

When I started to have weakness in my arms and legs followed by numbness or falling asleep of my limbs, I started to worry. I was exhausted all the time, no matter how much I slept. I could barely eat and had long bouts of nausea. Add to that my equilibrium being off and I kept losing my balance and almost falling off and on, I was starting to get scared. I mean I'm only 36 years old, what the Hell! When I started having vision problems (double and blurry) and kidney pain, I had my husband, Dave, take me to the hospital. <>

Every medical assistant, nurse, resident and doctor I saw mentioned MS (Multiple Sclerosis) as a possibility. They completed many tests and then encouraged me to see a neurologist ASAP. I did see a neurologist referred thru my General Practitioner (GP). I saw "him" from the middle of March thru the beginning of April 2008. Needless to say the experience and the neurologist were a nightmare. (Names have not been mentioned to protect the Guilty.) He basically, came up with nothing and wanted to know if I was feeling better now. Jerk!! Bye, bye to "him". <>

I went back to my GP for a better referral whom I had researched on my own. One of the top MS doctors at St. John Hospital. From everything I read, MS is a diagnosis you come to by elimination first and testing second. Since there are so many things that can mimic it, you need to be sure. My feelings were if this new guy was the best available to me, he would either recognize it for sure or be the one to eliminate the MS diagnosis altogether. <>

This ended up being one of my better moves. We will call him my "Hero Doctor" or HD for short. HD never gave up and from the moment I met him, discounted the findings of "him" (previous neurologist...bad, bad neurologist!!) When he began working his magic of testing and evaluating and showing his confidence to find an answer., I teared up. I said, "I knew you would help me." Because from the moment I found him on the web, I had that feeling, this is my man. He can be the answer for me. <>

I met him in May 2008, and after a long and frustrating journey, riddled with many tests, exams, ruling out of many possible diseases, etc. and long, drawn out waiting periods we reached December 11, 2008. The day I was diagnosed with CIS (Clinically Isolated Syndrome). This was the day I got my answer. The answer that I wasn't dying. The answer that I wasn't crazy. The answer that would lead me to begin to not only help myself, but to give me hope that I can have a life with my husband and my children. That I can "keep moving forward." <>

Thank you, Jesus!! Thank you, God!! Prayer does work. Patience can be a virtue...even though being patient sucks!! and my hero "HD" can truly help me. That he would NOT give up on me. That he would tell me there is hope. Yeah and all hail "HD"!! <>

I agreed today to participate in a research study/clinical trial for people with CIS. People with CIS are at a high risk for developing MS. Individuals with CIS have had a medical event or events suggestive of MS but have not developed symptoms of "clinically definite MS". <>

I have been told I am a perfect candidate for this study. I am an official candidate for the study as of right now. They will begin setting up appointments for my first visit within the next couple weeks. If I am approved after the screening then I will enter and begin the trial. I will blog about my progress, side effects, symptoms-improved or worsened. After reading about the trial, I found that the side effects will be the same if I took medication already approved for this. The true benefit I found is, I will be looked at as if under a microscope. MRIs will be performed and repeated every 3-4 months, I am to keep a diary of my symptoms, etc for review. Followed by blood work, and all evaluations of my vital signs, etc. Plus I will be continually re-examined by a neurologist throughout the study. And "HD" is the evaluating physician, so I can still see him! Happy for that. The drug they are studying is supposed to prevent or delay the onset of MS. <>

If at any point I am diagnosed definitively with MS, I move to the next level in the study which is a maintenance phase drug to try and keep MS in remission. Both drugs have been tried before, either in other forms or are now being improved upon. <> <>

I intend to answer any questions or concerns you have. The support of my friends and family has been invaluable to me. Thank you. Thank you all for your love and support!! Now let the games begin...

1 comment:

  1. Tammy, this is a great idea. Its kind of like a journal but you dont need to hide it under your bed so no one can read it LOL. Im glad that your finally getting some anwsers, just that has to be a load off your shoulders. I'm looking forard to reading about the trial and your road to getting better!


I welcome all comments to my blog. Please note that when you add a comment, it has to be approved by me before it will appear on the blog. Thanks for your support!!