Tuesday, November 4, 2008

What came next

The whole way home from the doc I was upset. I didnt know what I had or what was going on. He told me he would have to send me to a neurologist for official diagnosis. He also mentioned there was not anyone really good with dealing with MS in the area. He said that there was one lady but she takes 6 months to get into because she is highly saught after. He scheduled me with that lady and another doctor he said was the next best thing to get me into treatment asap.

When I got home I immediately went to my computer and started researching everything I could find about. I didnt like the treatment options that were available. I don't do needles. I kept hoping there was a secret pill I was just missing somewhere or that I wouldnt need anything. Once I found out what MS was, I honestly wasnt too surprised. Ive always had a rather psycho immune system since child hood. I heal at miraclous amounts of time. So finding out my immune system was on overload and attacking itself wasnt too shocking.

I got a call from my doc that the lady doctor came open and I was going there. When I got there, I saw a lady, but it was not the right lady. I think the secretary scheduled me with the first neuro open in that office and not the right doctor. Needless to say I did not like this other person. She was very impersonal and treated me like I was a waste of her time. Through the paperwork for the rebif shots at me and told me there was no other options. That was the 2nd and last time I cried over having MS. She did mention that she would support me to do a trial, but thats all she was offering me.

So as soon as I got home I was back at the computer searching for clinical trials. I found several in Nashville and Atlanta for several different pills. I applied to them all. The next day I got an email from the Fingolimod study in Atlanta. They were happy to hear from me and wanted to send me the info pack. Once I got the pack I reviewed it and gave the lady a call. She went over it with me and wanted to make sure I was OK with being on placebo possibly. I told her its either this or no meds so Im ok with being on the placebo if it happens. I had to send all my medical info down there to them and once all that was a go, they scheduled me to come down. I had to do blood tests and see the doctor and take a pregnancy test, which I have to do every time I go there.

The doctor was a bit worried about my condition and said if I was his patient, he probably would be recomending a lot of other things besides this study. When I told him I didnt like any of the treatment opptions and was going to go med free, he said I could do it. I had to promise that if I got worse that I would let him treat me. He was thinking chemo. I was a little shocked that he thought I was so bad when the neuro was so dissmissive of me. I have lesions in every part of my brain and they are active. I guess when people look at my MRI scans they think I should be in a wheel chair or something but I feel fine.

After approval I was scheduled for all of their pre tests. The study requires pre-tests of all sorts. These are the only ones you get to see or know anything about. After you start the drug, you are no longer in the know unless something bad happens.


LISA EMRICH November 11, 2008 at 8:44 PM  

Hi Penelope,

I'm sorry you have MS, but I'm happy to welcome you to the MS Blogger community. There are several great people blogging about MS and offering support.

There are other folks who have been in the Fingolimod trial (the one of Fingo vs. Avonex) and are doing really well and moving into the extension trial. I trust that you will do great!!


Penelope Smith November 12, 2008 at 3:24 PM  

They have that one in Nashville. I didnt apply to that one, because I didnt want to take the chance of getting put on the shot. lol. The one in Atlanta was just a pill.

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