what is happening

A forum for discussing the unique concerns of senior members of the Multiple Sclerosis "Club."

what is happening

Postby pinda15 » Wed Jun 23, 2010 5:49 pm

Hi to all. Looks like lots is happening re CCSVI. How does the Golden Years group feel about this procedure. I have been reading since the start and not sure. May ask about blockages when next to a neuro. in Nov. Will be a new one so will see how receptive he is re my problems with Central Nervous System disorder / possible MS. Been over 8 years now. Linda
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Postby belsadie » Thu Jun 24, 2010 3:19 pm

Pinda,
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................... :roll: :roll:
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Postby pinda15 » Thu Jun 24, 2010 4:30 pm

Hi Belsadie. I have been seeing an MS neurologist for the last 8 years every 6 months or so. Have had many tests etc. and he dx me with Central Nervous System Disorder. Have 12 or so lesions on MRI but because of my age could be an older brain. I'm 62 now. Did say if I was 30 would say MS. He is very good and well respected in the MS world. One reason I have not gone to another Neuro. before. My Family Dr. has wanted me to have a second opinion for the last few years and have just said yes I would. Apt. for Nov. My Dr. thinks the long wait is because of asking for second opinion and who my first neurologist is. Does not want me to cancel the appointment though. Guess I will keep. Maybe they will look at me with a new approach and find out what is happening. I'm not on any medication but do not drive now, use a stick to help walking some times, energy levels have dropped more in the last year, over reactive reflexes more active to sound, movement, and touch, (reason I do not drive), etc. Would like some answers and maybe some help is out there. Had veins checked by a vascular Dr. at the beginning of my problems, maybe look at again. Been following the CCSVI site since on the forum. Looks to be part of the answer with many more questions. My family Dr. thought the antibiotics could be the answer. Neurologist did not think I was a candidate, not the symptoms for. I still wonder about them too. Much to look at and life goes on around me. I'm OK until my symptoms get worse and have to deal with. This has just happened. Let me know how your tests go. Linda
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CCSVI in the Golden Years

Postby Shayk » Thu Jun 24, 2010 4:41 pm

Linda

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 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

I like it. :) I'm not scheduled yet. I had hoped to be in Dr. Scalfani's trial.

Take care

Sharon
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Postby pinda15 » Thu Jun 24, 2010 7:51 pm

Hi Sharon. Good to hear from you too. Just got back checking this forum after a long trip, computer shutdown with virus and up loading all our info to new one. Hence my new name, pinda15. Would not recognize me with the other one so had to re join. Did attend a meeting with the Provincial MS group where CCSVI was talked about with MS Clinic Dr's. Very interesting.
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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Postby elyse_peace » Thu Jun 24, 2010 10:16 pm

I am 60. I lost my ability to walk only two years ago, after falling and breaking my pelvic bone. I could not afford to take that break from walking. Walking was already pretty bad. I have gone downhill fast since then.
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.
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Postby sanfran » Sat Jul 03, 2010 3:01 pm

I just found this thread and I'm so happy to know that there is a place for the over 60's. I am 65 and have had MS for 40 years. I can still walk but get very tired after a few minutes. I miss those wonderful retirement years we've been promised!
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.
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Postby pinda15 » Sat Jul 03, 2010 5:06 pm

Hi sanfran. If you do CCSVI keep us updated. Would be good to hear from someone in the Golden Years :) I'm reading about but have not talked to my Dr. Went to a meeting a month back and heard the pros, cons and need for more research to see what is happening. Hard to know what to do. I'm progressing slowly, been 8 years since first symptom, not dx with MS, dx with Central Nervous System Disorder possible MS. Lack of MS dx mainly due to my age, 62. Linda
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Postby sanfran » Mon Jul 05, 2010 3:15 pm

I'll definitely post any info as it happens. I saw my GP today and he agreed to do follow-up care after I get home. I'm VERY pleased about that. I still don't have a date, but I am a patient person, sort of :wink: I'm just fed up with noticing little things get worse all the time and I'd love to see just a tiny bit of improvement!
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