Has anyone been liberated that is a primary progressive MSer

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby esta » Sun Jun 20, 2010 1:14 pm

L
these were my changes - even though i only changed on the EDSS scale .5

purple feet ice cold - became warmer
right cold hand - warmer
ice cold trunk and legs - warmer
foggy head - gone
headaches - gone
breathless when talking - gone
slurred words thick - gone
fatigue - gone
heat sensitivity-loose energy -better-showers hotter
core weakness,imbalance - better control- posture
spasms in legs - only there after using legs
adductors stiff - gone
weak legs - better
coordination in hands and arms - more controlled
burning itch/below left shoulder blde - gone
stronger arms - more controlled
hands clawing - gone
pain everywhere - gone
bladder stream - strong
foot drop left foot/turned in - lifted/turned out
constipation - no changes


I did a % scale of the improvements, till after a while it all returned.
you must see why i have to go back, it was all so wonderful and i just expect it to be the same changes, only they will stay this time. there are no guarentees but i am an optimist by nature.
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Postby L » Sun Jun 20, 2010 1:17 pm

esta wrote:L
these were my changes - even though i only changed on the EDSS scale .5

purple feet ice cold - became warmer
right cold hand - warmer
ice cold trunk and legs - warmer
foggy head - gone
headaches - gone
breathless when talking - gone
slurred words thick - gone
fatigue - gone
heat sensitivity-loose energy -better-showers hotter
core weakness,imbalance - better control- posture
spasms in legs - only there after using legs
adductors stiff - gone
weak legs - better
coordination in hands and arms - more controlled
burning itch/below left shoulder blde - gone
stronger arms - more controlled
hands clawing - gone
pain everywhere - gone
bladder stream - strong
foot drop left foot/turned in - lifted/turned out
constipation - no changes


I did a % scale of the improvements, till after a while it all returned.
you must see why i have to go back, it was all so wonderful and i just expect it to be the same changes, only they will stay this time. there are no guarentees but i am an optimist by nature.


And what do you say to those who fear it might all be the placebo effect?

I can see why you are looking forward to getting back! A dream come true!
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Postby esta » Sun Jun 20, 2010 1:32 pm

Thanks L!!
right now i feel quite vulnerable to nay sayers, buuuuuuuuuut at least i know the diff...
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Postby KateCW » Sun Jun 20, 2010 3:03 pm

Bill and Laurie, what about Dr. siskin in Albany New York? Much closer for you. I am from Calgary and have a call in to them

http://www.communitycare.com/Practices/ ... /CCSVI.asp
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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Postby broomdancer » Mon Jun 21, 2010 1:22 pm

Hi Tims:
My husband has PPMS dx'ed in 04. Uses a cane full time and a scooter locally. Never on any MS drugs except for baclofen and Botox which he highly recommends for tightness of the legs and spascity. Just returned from Poland last night. 6 MS patients were treated June 15th and 2 with severe disabilities. 1 lady had no mobility, poor eyesight & unable to speak. Within 24 -48 hrs began to wiggle her fingers and toes, first time in 10 yrs and also answered a question with words she was unable to do before. Her sister Maja gave me permission to report her progress. The other lady, I had touched her hand (she hadn't the ability to shake my hand) the day before the procedure and it was ice cold, immediately following the procedure her hands and feet were warm, I was very impressed. She was elated. The next day she said she could feel her legs for the first time in years. Another man began to sweat for the first time. Sorry, I can't remember the types of MS of everyone but I had to let you know some of the outcomes that I have seen for myself.
Now for my husband, he is the perverbial pessimist and if you asked him why he was doing this he would explain "to make my wife happy"! and in reality, if he didnot take the opportunity and it could have helped him he would have regretted it forever. So with no expectations, he went along for the journey. He was told not to expect any improvements for up to 6 mos and following the treatment he said he didnot feel any different, no surprise there...Incidently, I video taped him the night before the procedure. The following evening, after the procedure we went out to dinner with some wonderful and amazing people we met there. On our way he stopped and looked at me and said " my foot isnot dropping"! This is huge...Plus it was facing in the forward direction instead of out to the side. He could not believe that this was actually happening to him but he was still skeptic. Next, I discovered that along his love handles there were dark red surface veins and noticebly very cold to the touch. Gone...When I video-taped him 24hrs after the procedure he walked better but amazingly he could lift both of his feet onto the top of the bed. Still skeptic though. Hasnot complained of being tired and before the procedure he struggled with great difficulty to get out of a chair or bed while getting up but now he has noticed that it is a lot easier for him, he alludes this to getting alot of rest while in Poland. So we have the next 6 mos or so to see what is next. He shared a thought with me with a smile on his face that maybe he can resume playing pool, a game he loves.
Why everyone is different with their outcomes I certainly cannot explain it but I certainly seen enough to say it is worth the expense and time. Hope you all forgive me for this long worded report but I am so excited to share our experience. He had 2 angioplasties in his jugulars & no stents and if he needs it to be redone so be it but by that time we hope Canada will have approved the procedure..
Take care
Diana
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Postby TFau » Mon Jun 21, 2010 1:26 pm

broomdancer:

That is wonderful. My husband was diagnosed with PPMS in 1997 and is using his can more and more. Foot drop was where it all began - if that was alleviated, it would be amazing! Thank you for your story!
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Postby L » Mon Jun 21, 2010 1:38 pm

That's great to hear Diana. Let us know of any further improvement!
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Postby broomdancer » Mon Jun 21, 2010 8:55 pm

Bohemianbill:
During our treatment period there were 2 patients out of 6 that were more disabled than Laurie.
If Laurie prefers her chair by all means take it. I asked for assisted care for my husband and we were treated like royalty from the arrival at the airport until our return home. No lineups, attendant to wheel & help at every junction, in fact they greet you knowing your name disembarking at the door of the gangway. If you land at Frankfort ( the 9th largest airport in the world) you can buy a Jaquar or Rolex while you are waiting to board. (couldn't locate a Timex).
Ask your travel agent if you are flying economy, for an aisle seat or if lucky, in the front row of the cabin there is much more leg space. They seated us on the Katowice flight right behind first class and only 3 seats from the exit. Air Canada 330 has an awesome business class area where you sit in individual cubicles with an elevated foot rest.
While my husband uses a cane full time, while we were there, we decided to rent a wheelchair. One of our new lifelong friends was Polish so through her we managed to acquire a rented chair. We rented it for a month at $50. cad. Left it with Chris one of the Euromedic drivers and said he could keep it and claim the deposit in 3 weeks time and with the rent he could charge, turn it into venture capital and buy one for their future patients.
Just like to mention that we took 2 maps with us and pinned them on the wall at Euromedic, one Canadian and one World. Please find a tac and pin where you are from. I didnot put up a note or take enough pins to pin. Wishing Laurie and you the very best outcome possible and to keep the faith...
Take care Diana
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