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Something positive
Posted: Fri Sep 12, 2014 5:47 am
by Punchy
All I do on here is vent or complain, and love that I van do that here, but for once I can post something positive.
I received results from my recent MRI and they were pretty good. Less lesions than 3 years ago, to start. I realize the presence or absence of lesions doesn't necessary indicate much as far as disease progression goes.
However, when I was diagnosed 7 years ago they found a large lesion on my brain stem that they correlated to the intense vertigo I experienced in my second relapsed. They also hypothesized that its position could also be the responsible for the unusual hemisensory parasthesia I was experiencing. We called the lesion "Big Bad" and I experienced two more relapses of vertigo and parasthesia. I also gave up driving out of fear of vertigo suddenly striking.
Big Bad hung around for 7 years, but I'm happy to say that as of last June, he has effed off and disappeared. I am going to claim this as a victory!
Re: Something positive
Posted: Fri Sep 12, 2014 6:56 am
by DougL
good to hear
Re: Something positive
Posted: Fri Sep 12, 2014 8:13 am
by Punchy
Thanks! I should note that I am meds-free, other than a year on rebif about 6 years back.
Re: Something positive
Posted: Fri Sep 12, 2014 9:58 am
by ElliotB
Congratulations on your progress! I will add my little bit of positive news to yours. My balance has been affected as well and I am doing so much, much better these days. I like to bike ride and last year I bought a 3 wheel bike. I think my balance has improved enough to the point that I can ride a regular 2 wheel bike. I bought one last week and it was delivered yesterday, and will be trying it out hopefully by Sunday (with a helmet) once I put it together.
Feeling better feels soooooo good, doesn't it! (Something most just take for granted.).
Re: Something positive
Posted: Fri Sep 12, 2014 11:05 am
by THX1138
We need a lot more positive news to be announced at TiMS.
I would like to see a dedicated topic with multiple subtopics telling of how people have gotten better. And this is important - specifically how they did it. Vague descriptions of how one has improved, while being positive, leave others with an often daunting challenge to mimic the actions that were found to be helpful.
Descriptions of how one has achieved temporary symptom improvement and/or long term improvement would be of great value to TiMS members and anyone who visits TiMS.
Re: Something positive
Posted: Fri Sep 12, 2014 11:20 am
by Punchy
That's a great idea THX. I realize mine is vague (because honestly, I've done nothing) but anything that can inspire hope is important.
We take whatever victories we can.
Re: Something positive
Posted: Fri Sep 12, 2014 11:28 am
by ElliotB
"specifically how they did it."
The problem with this is that there is really no way of knowing what actually causes someone to improve. Some people do nothing and improve, others do everything possible between meds, diet, exercise, etc. and don't improve and/or get worse. MS is a very complex and unpredictable illness. And what works for one may not work for another.
But I do like your idea!
Re: Something positive
Posted: Fri Sep 12, 2014 3:09 pm
by THX1138
The problem with this is that there is really no way of knowing what actually causes someone to improve.
I see your point.
I think that is all too frequently the case, but not always.
For example, I can say without a doubt, that magnesium makes my muscles less spastic and more relaxed and much less hyper-reactive. I have witnessed the worsening of symptoms with reduced Mg intake and improvement of symptoms with increased intake. I have also noticed worsening of symptoms with consumption of things that lower Mg levels such as calcium and alcohol. These relationships are not unique to me but are, instead, established facts regarding Mg.