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I don't really have a lot to report, but as promised I plan to document my experiences with the HALT MS study. Thursday we traveled to Seattle for what ended up being a VERY long but uneventful day. I had my first MRI that is officially for the study. It was preformed at the Seattle Cancer Care Alliance and from what I am being told that same MRI machine will be used for all of my MRI's throughout the 5 years. Fortunately it is one that comes with headphones, music and it's not too crowded. :) I am not one that gets claustrophobic but there are some MRI machines I have been in (mainly older ones) that seem much louder and smaller than others. This one is fine by me.

Friday I spoke with the transplant coordinator through email and the results were in, no changes to my previous one in May (which is NOT surprising at all, since I don't seem to have a lot of MRI changes doc likes to say I have a lot of what they call invisible lesions). There have been times they have scanned me well into a relapse and my MRI doesn't seem to show a lot. I'm just one of those patients....I have lesions (usually only 3 or 4 that are active) and I have Dawson's fingers, but that seems to be the norm for me when it comes to MRI's. One more way we are all different I suppose. I have heard of people who light up like a Christmas tree yet don't seem to have too many symptoms, then there are people like me who have one thing after another, yet you look at the MRI and it just doesn't really say much. I even had one relapse where I had really bad optic neuritis, vocal fatigue, and some hearing loss and my MRI did not reflect any of those things....but my doc could see how inflamed my optic nerve was....crazy how this illness is sometimes.

Anyway, I hope you are all having a good weekend. I don't have appointments again until Friday. One to check my eyes and the other to see the study Neuro and have a spinal tap (did I mention how I am NOT looking forward to that?) I will update again after my appointments. :)


Kim said...

Glad to hear things are moving forward for you. I look forward to your journey and contribution to all our futures!

I'm one of Christmas tree brains... 27 little guys showed up and no symptoms. Still no real symptoms 3 years later to really complain about! Weird brain. I do wonder how many lesions I have nowadays. I don't get to see the MRI results on my clinical trial.

Denver Refashionista said...

Good luck with the MRI and the study.

Jaime said...

Kim, I wonder if they are gonna let me see my results once I have the transplant (assuming I get it). I never even thought about the fact that with this being a part of a clinical trial they may not want to release the information to me. I guess I need to ask when I am in Seattle next week.

Isn't it interesting how different all of us are? Weird brains indeed.

I hope you both, Kim & Nadja are doing well. I appreciate all the well wishes and support.

Take care!

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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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