WORRIED-How should I go about this-help!?

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

WORRIED-How should I go about this-help!?

Postby thornyrose76 » Sat May 22, 2010 2:32 pm

I, with my mother's help , am going to hopefully be examined and have the angioplasty done in New York with community care physicians.. Im in pretty rough shape . I first got sick at 20 and immediately progressed, just went down hill and fast . I'm 34 and have been in a wheelchair since 26. I haven't walked since breaking my ankle 8 years ago this fall. I can feel, burning, neurological pain from lower thigh down. My leg muscle tone isn't too bad , legs have alot of spacticity (thats the term right?). I catheterize , and Ihave hand tremors. right hand is a little weaker than the left . Trunk ataxia . If I over do it, my hands are a bit useless, weak but with rest they come back on me . My body physically tires very easily now . Have trouble sleeping. Can type but unable to write-
go figure!

With all of that, I feel I need to do some thing, and so have decided to go to New York or at least hope to to get veins checked and hopefully have th angioplasty. But I have a lot of concerns and zero guidance from My doctors here in Winnipeg. Here's the point:

I go to New York, everything paid for by getting loan from bank (it can be done I'm told but need to inquire) and then what? My thoughts are I want to at least try and rehabilitate myself, but how would I go about that when I haven't walked in almost 8 years? Could aqua therapy help, but then who is going to help me with tht? They don't exactly have the greatest neuro rehab here, atleast I've been told that by a physiotherapist...what happens if restonisis occurs? Or if stents I have problem? Wpg is quite far from New York and I don't have a lot of money but I am quite desperate. Any guidance I would be really grateful- please help!!!!! :cry: :oops:
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Postby Daisy3 » Sat May 22, 2010 3:23 pm

I feel for you...

It sounds like quite a situation that you find yourself in. Why not take one step at a time? First get yourself checked out,have the procedure done then have a look for what you can do regarding rehab?
There must be local MS centres etc set up for this purpose..
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Postby SandyK » Sat May 22, 2010 4:25 pm

You sound like me...so many questions and worries. I decided I'm going for it. I know if I don't do it I will always have the what if question hanging over me. I have prayed for this since I heard about it last year. I feel that if God doesn't want me to do it he will put up obstacles but so far it is smooth sailing. I am still scared to death. But now that I have made my decision I feel more at peace. If I don't get any improvements at least I went to Poland and tried.

I wish you the very best.
Diagnosed 1994, Self EDSS is 6.5
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Postby Cece » Sat May 22, 2010 6:03 pm

I wonder if there is information online for rehab-type exercises that could be done at home? My only experience with rehab was for my son as an infant, but there I was able to learn the maneuvers she was doing and do them at home 3x a day with him. I know this is a very different sort of rehab but maybe?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby thornyrose76 » Sat May 22, 2010 6:10 pm

It's just unchartered territory for me and everyone else, there is a physio wing of my ms clinic I could try there...has anyone, that has had the procedure done, begun or seeing physiotherapist? Does anyone know? If this applies to anyone reading this what has been your experience or rather how are you approaching trying to rehabilitate yourself, that is if you can?
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Postby thornyrose76 » Sat May 22, 2010 6:29 pm

What if I develop a blood clot, what would I do? I guess (duh) go see my GP, same with restenosis, but it's just that in Canada they are so dismissive of the whole issue, especially in Winnipeg...
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Postby Cece » Sat May 22, 2010 6:55 pm

Many docs are putting patients on blood thinners, but then that means you need someone back home to monitor you while you're on the blood thinners.

Wishing you the best with whatever you decide.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby blossom » Sat May 22, 2010 7:00 pm

hi thornyrose76, it sounds like our ms disabilities are about the same. the big difference is i'm an old warrior 63 yrs. old. i still want desparately to get tested and treated. i've already lost too much. a lot of your thoughts are well warranted i have a lot myself. but, first tested and treated see what happens. hopefully more places will be popping up shortly to get treated if you need it. as far as rehab, my bladder problems keep me out of water but if i can at least get that under control i plan on water therapy along with any kind that will strenghten me. i am also trying to find out where electrical stimulation therapy can be gotten. did you ever read dr. terry wahl's ms recovery site? she claims diet and electrical stimulation has got her back on track. diet is tough for me although i have imuproved a lot and i'm working on it. pain is something that has become such a part of life that if getting shocked can help get me moveing but that at this time is only a suggestion.
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Postby Rose2 » Sat May 22, 2010 7:27 pm

Thornyrose,
I agree with Daisy. One step at a time. And slow steps at that. I was not wheelchair dependent, but I have found that my energy and strength are still getting a little better everyday as I can do a little more every day.
I am sure whoever treats you in New York will work with you and your mother to help you get referred to continuing care in your area. They will let you know what you will need.
Rose
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Postby whyRwehere » Sun May 23, 2010 5:53 am

Thornyrose, it sounds hard for you, if it is not too expensive, you are right to get tested if you can, but I wonder if the politicians in Canada are going to change things or not?
Like Blossom, I want to know more about Electric Muscle Stimulation....I asked my husband to ask his physiotherapist about it on Friday. She had the opinion that it tired the muscles too much, but we have the opinion, that his muscles need some sort of work out before they waste away...the muscles are not the problem, but the signal that they are getting. Who do you get to do it though??
the physio he does now, helps a little, not a lot, I would say. He does mostly stretches with a little leg lifting twice a week. The last physio moved his leg muscles more for him...he thinks that was better for him. I wish we could afford an endless pool, but no such luck...
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Postby shye » Sun May 23, 2010 6:06 am

Thornyrose-
I have sent you a PM...
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Postby Fernie12 » Sun May 23, 2010 6:15 am

Hi Thornyrose,

I think you are asking all of the right questions. And good for you to go after this treatment - I too am waiting for my turn in Albany. The Docs seem really nice and can probably help with some stuff as you head home...but if you can find a way...grab some support from a physio. Would something like a community care access centre (that's what we have in Ontario) be able to help? They would at least have nurses who should be able to provide some input on your rehab, u would think?

Also, check out http://www.ala.ca/Content/Prov-Terr/Man ... p?langid=1 and contact them for some advice on existing programs in your area. I too think the pool is a good place to start, also perhaps some seated exercise class too? Remember, just cuz you are going for this procedure that is not yet offered in Canada, does NOT mean that you cannot access other parts of the medical system - like rehab. Ask your GP for a referral and claim as much as you can. Your GP should be a partner in this with you!!! Actually, I would start there. What do you think?

Just remember, you deserve this. Don't feel like cuz it's a (supposedly) experimental procedure that you should have to beg and plead for help once you get back. I like that you are being proactive and thinking of this now - find those supports before you go!

Let us know how things move along! And if you need any help, remember, we are all in this together and we'll all get through this together![/code]
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Postby Fernie12 » Sun May 23, 2010 7:23 am

Just heard back from a physio friend. Here's her two cents:

"Unfortunately, I don't know anything about Manitoba. In Ontario we have OHIP clinics (and that is it) - the wait lists are long but it is free and if you got your name in early that could work. Some private clinics will do pro-bono work, so that is an avenue that could be looked into.

I would say as a large group spread across Canada, you should contact the Canadian Physiotherapy Association. They would have or should have all the info you would need and maybe you could convince them to team up???

Just another idea - you could contact Universities and ask for help from the PT students.

Also, for those that could pay for the initial assessment - if the therapist is told in advance - they could assess them and set them up with a home program, which family and friends would need to assist with. When their status changes, they would just have to pay for the re-assessment."
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Postby whyRwehere » Sun May 23, 2010 8:29 am

Sounds like too much work and cost to set something up, then. Why can't the societies do something useful like send out free dvds for things one could do at home (ie yoga exercises, or other exercises your family could help you do). Maybe they could develop a program or discover if EMS is helpful...why don't they do useful stuff like that???
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Postby lyndacarol » Sun May 23, 2010 12:58 pm

Just to share my experience --blossom mentioned Dr. Terry Wahls: with a prescription from my physician I ordered the Neuro-Muscular Electrical Stimulation device which Dr. Wahls mentioned in her presentation. Although Dr. Wahls said that the unit cost $350, I was charged $700. The accompanying manual was woefully poor, really worthless. I received a "reconditioned" unit -- this possibility was never mentioned to me, and I expected a new unit for the full price I was paying.

I returned the unit immediately without trying it.

In my area there are at least two physical therapy groups who offer electrical stimulation. (By the way, electrical stimulation is commonly used by athletes to build muscles.) I would think that any physician would be willing to prescribe it for any MS patient, certainly one in a wheelchair, in order to maintain or build muscle tone.
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