This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
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Although it has not been too long since my last post I feel that there has been a lot going on. Last week I traveled to Seattle for follow-up appointments with my Neurologist and Sleep doc as well as saw two new Pulmonary specialists. I am still trying to process the information to be honest. My first appointment was with my Neuro. I am officially no longer on Copaxone. I had a pretty bad relapse just about 3 weeks ago and between that and all the pain and problems I was having with it...we decided this just was not working for me. So, that leaves me with little options when it comes to treating my MS. Because of this my Neuro talked to me about what I believe is going to be a ground breaking study. She has referred me to the HALT MS Study. For those of you who have never heard of this study, well here it is.....HALT MS Stem Cell Transplant Study

Now at first I was a bit uncertain about the idea of having a stem cell transplant. But, as I started to look into it, learn more about it, and realize that I very well may get my life back (or some of it) I decided that this just may be my best option. Besides a few weeks of tests, chemo, steroids and pain is well worth it if it is successful, which I believe it will be. For so long now I have been sick...not just MS but each one of my medical problems seem to feed off of each other. Maybe, just maybe, if I can get my MS to settle down then some of the others will follow-suit. Granted that may just be a pipe dream, but I am remaining hopeful! :) Anyway, as I go through this process I plan to document the whole thing. I will keep you all posted on how it goes. If I am found not to be a candidate....well then there will be documentation of the process. For now I am keeping my fingers crossed and staying positive that it will all work out. And, if it does turn out I am not a candidate then we have a back-up plan of either Cytoxan or IVIG. So any way you look at it there are still some options. :)

My other appointments went okay. The new Pulmonary docs have some ideas but kind of feel like my other doc (who referred me to them). My lungs are not good....36% function. But, they feel some of my other health MS and GERD in particular are more likely the culprits of what we all thought were lung problems. See, just because it looks like an asthma attack and feels like an asthma attack....doesn't mean it is one. Now I already knew the MS could cause problems with swallowing, aspirating into the lungs, and vocal cord dysfunction....but what I didn't know is that GERD can also cause issues with the vocal cords. Both of these together is kind of a nightmare situation and then when you put together the fact that my lungs don't work great doesn't take much for me to having breathing problems. So, they are coming up with a plan of action and then my original Pulmonary doc will follow-up with me. The sleep doc was really just a follow-up....just needed humidifier.

Well, I hope you are all doing well. I really should get to bed....maybe that is something I should be talking to my sleep doc chronic insomnia. Don't you just love those ups and downs? Or am I the only one who seems to get them. Seems some weeks I can't get enough sleep (gotta love the fatigue) and then other times even when I feel tired, I just can't sleep. Lovely! Okay....I'm off for good this time. Take care of yourselves.


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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