what is happening
what is happening
Hi...Have you not seen a neuro in 8 years? It doesn't matter; they probably know less than we do... At least that's been my experience. I guess I'm Golden {over 60} and have been diagnosed for 10 years now progressed to SPMS now but I'm still standing!!! I'm going for testing for CCSVI the end of this month...we'll see. I truly believe this is the tip of the iceberg answer for this MesS..It makes such sense! and If you've checked out the youtube videos for before and after...it's just amazing to me so---I'm giving it a try.
I was part of a clinical trial for High Dose Cyclophosphamide about 4 years ago. No permanent relief of disability. It did lessen the fatigue.
I am not finished..have alot more to do before I give in to this horror, if ever.
To me, it doesn't matter how old or debilitated you might be, when something comes along that makes more sense than any other nonsense they've bee feeding us, I say GO FOR IT...hard & fast.
After the trial, I stopped taking the DMD{avonex}-the fourth one I tried and NONE worked- and haven't started another...too many side effects along with ineffectiveness.
Keep investigating and GET ON A WAITING LIST for testing and possible treatment.
I can't wait til the MS label is discarded and we say we have [had]:
Genetic Venous Truncular Malformation with subsequent neurological symptoms. Sounds better than MS[the mysterious]
BTW Google cerebral vascular disease and check out the symptom list!
Rake care and happy hunting...................


CCSVI in the Golden Years
So great to hear from you again. I don't check the "Golden Thread" very often because it's so quiet.
I think CCSVI is the most hopeful possibility I've encountered in the 7 years since I've been diagnosed. Given that you haven't been diagnosed yet, I think I'd ask your "new" neuro to rule out CCSVI before considering a diagnosis of MS.
I hope you're doing relatively well and still gardening. I'm still doing "work", estriol and progesterone, exercise, water aerobics and recently started yoga. Doing relatively "ok" I think--all things considered.
Belsadie
I like it.I can't wait til the MS label is discarded and we say we have [had]:
Genetic Venous Truncular Malformation with subsequent neurological symptoms. Sounds better than MS[the mysterious

Take care
Sharon
Will see how the new Neuro. is and if I should be checked out for. May try to get a cancellation appointment. Busy now and no time to figure out. Having some new problems as well and trying to space my work periods. Restorative yoga has been good for me, do once a week. Start swimming again this week. Been a few months. Walk when I can but do at least 2 hours of work on our Organic farm most days. Some days more if able. This all helps. Doing my art work too with Art and Organics event coming up in Aug. on our Farm with 12 or more artists. Looking forward to.
Linda
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I am very interested in the procedure. I hope to get on Dr. Sclafani's wait list.
I am psyched that there is a possibility of improvement in our situation.
I have my name on the wait list for CCSVI treatment in Bulgaria.
I am wondering if there is any possibility of positive outcome for people of my age, but I'm willing to take a chance. I'll accept any improvement that is given to me! I'm tired of this disease.

