Hope But Hopeless

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

Hope But Hopeless

Postby thornyrose76 » Wed Nov 25, 2009 7:19 pm

Having watched the documentary (I live in Canada). I am filled with such hope, I mean it all makes total sense in my opinion . I am a 33 year old women who has been sick since 20 . It started with bladder problems, then 2 years later I developed left drop foot and heaviness in my thighs. A year later I was diagnosed with MS, after they initially thought it was either spinal tumor in my neck or brain. Told to exercise, did, a year later put on Betaseron . In 2002 my MS neurologist noticed me deteriorating and called for 2nd MRI . There was no change from the first MRI and just cont on with same path I had been on since 20 , meaning deterioration . Tht fall I broke my ankle, and since then have been in great pain , feet and lower limbs burn like hell 24/7. I have been in a wheelchair since . I feel but can't move legs , they move on their own , very spastic(?) . I have been told I have secondary progressive MS. I have hand tremors, can type but cannot handwrite. If I over work myself I have trouble using my hands.. I cannot work, depend on social assistance and have zero support in my life. My mother has disappeared despite the fact I live with h er and father is dead. Dr . Zamboni has given me hope, nothing else has ... problem is I have no way of getting to Italy or California, so enter extreme hopelessness. I am very disillusioned tonight. :cry:
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Postby Algis » Wed Nov 25, 2009 7:34 pm

Keep positive thornyrose! I am sure solutions are pretty close. Many people here live in Canada and probably will popup to help :)

Cheers and be well :)

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Postby mrhodes40 » Wed Nov 25, 2009 7:34 pm

Gosh I am sorry your situation is so awful :cry: --the destruction of our lives is the worst part of all of it.

The good thing is that this is going forward fast so there may be something one way or the other kind of soon and people may not have to travel far to get help. I hope that it can be local to most soon after accepted as proven to be helpful. I have been an advocate that persons who are out of options and waiting for MS to do its nasty work ought be allowed to see if they have stenosis and be given a chance to consider the possibility to be able to get compassionate treatment sooner than later.

But in addition to that there are regenerative strategies coming as well that may turn out to be good and also some other kinds of technology: robot legs that you wear and things of that nature that may make life a lot better than we dream of now.

When I became a nurse in 83 things for disabled persons were much much less interesting than they are now. let's still have hope that things may be better with new strategies than we think.

I tell you what I sure didn't say to myself 15 months ago that CCSVI or anything like it would shake things up! That just goes to show how good we are at predicting eh? Lets be hopeful some other stuff is on tis way too! :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Ruthless67 » Wed Nov 25, 2009 9:04 pm

Marie that was beautifully put! Thank You, I think all of us in this forum needed to hear that.

thornyrose76, please hang on to your hope and continue in the forum, there is so much help and encouragement here. Just get comfortable and settle into your chair and join the chats. Welcome.

Lora
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Postby mazza » Wed Nov 25, 2009 9:27 pm

Hi Thornyrose 76,

I agree with the others, hang in there. What amazes me is the hopefulness that Dr Zamboni's work is generating and how often the reaction is that it makes sense. I too am impatient and wishing this will catch on quickly.
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Postby gibbledygook » Thu Nov 26, 2009 3:01 am

Hi Thornyrose, please don't despair. I'm sure that this will come to Canada soon. I wonder if taking a little vasodilating and blood thinning herbs like salvia miltiorrhiza or even just a low dose aspirin might help a bit in the interim. When I started taking salvia miltiorrhiza which the Chinese call Dan Shen I immediately, within hours, noticed relief from the burning pain in my left leg. You can buy salvia miltiorrhiza from iherb.com. If the blood vessels are dilated and the blood thinned a bit then the passage through any putative constriction may be eased. I also felt that capsaicin or chilli powder ( several grams) was helpful with bladder control and spasticity. There is a suprising amount of research on both of these natural products on the PubMed website which is extremely informative. Also maybe you could consider travelling to Poland and Dr Marian Simka. I believe the costs there are more in the region of US$5,000 rather than the trillions over at Stanford! And Marie is right about repair. She's using a Bioness machine, I think, which does wondrous things to recharge the legs.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby robbie » Thu Nov 26, 2009 4:30 am

The MS Society of Canada will issue an invitation for research operating grant proposals on CCSVI related to multiple sclerosis from qualified investigators based in Canadian institutions. Proposals will be evaluated for their scientific merit and relevance to the field of MS.

The competition will open on December 9, 2009, and the deadline for applications will be January 22, 2010.

Had ms for over 19 years now.
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Postby Algis » Thu Nov 26, 2009 4:38 am

Wonderful!! Canadian friends; you rock!
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Postby thornyrose76 » Thu Nov 26, 2009 7:44 pm

thanks very much, I haven't done anything like this, meaning anything regarding my MS. Tim e to peel back the layers, though, still... it's hard for me.
Ruthless67 wrote:Marie that was beautifully put! Thank You, I think all of us in this forum needed to hear that.

thornyrose76, please hang on to your hope and continue in the forum, there is so much help and encouragement here. Just get comfortable and settle into your chair and join the chats. Welcome.

Lora
:wink: :lol: 8)
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Postby thornyrose76 » Thu Nov 26, 2009 7:48 pm

yeah, the MS Society here in Canada is giving ccsvi the push it needs, thank God. You can't poo poo Zamboni's findings, it is intriguing.
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hope

Postby GiCi » Fri Nov 27, 2009 4:39 am

thornyrose76,
Before Zamboni's discovery there was no hope for us: interferon, prednisolone, stem cells and many other drugs failed to deliver a real improvement in MS.
Now CCSVI theory has finally given us a real possibility of defeating this horrible condition and we should keep our hopes sky-high, in spite of the present opposition to it mounted by most neurologists.
Evidence is accumulating and the treatment of CCSVI will in time become widespread.
You are suffering and your impatience is understandable, but rest assured that your day will come.

GiCi
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Postby bluesky63 » Fri Nov 27, 2009 7:15 am

Hi there, Thornyrose. I am reading your story with great emotion because I can identify so strongly with many of your feelings! I have had an aggressive disease course with rapid disability and not much success with available treatments. And one of the greatest difficulties is a lack of support personally to help with the issues of being a disabled person in this world -- that is the issue that I have come to feel most strongly about.

I have found that while there is emotional support for disabled people within the MS community, there can actually much more *practical* support if you look to disability groups beyond MS. For instance, independent living centers can offer ideas, or groups for people with cerebral palsy, or spinal cord injury, etc.

I have used a wheelchair for many years, but it wasn't until I discovered disability groups that my mindset changed and I learned about better disability technology, access issues, advocacy, etc.

I have definitely seen that there can be a tendency for professionals to "give up" on those of us with challenging MS, or to let us slip away into further disability. Or we can do it to ourselves. The truth is, we can still keep working on our health, we can still get out and live, and we can stay in our best condition so we'll be ready when a procedure or treatment is available!

Sounds good, doesn't it? :-) Actually I get totally depressed just like you and I'm trying to pump myself up too. :-)
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Postby thornyrose76 » Fri Nov 27, 2009 1:29 pm

It's nice to know I'm not alone. I have always looked at it as I am still me, still that same 19 nyear old girl with the world at her feet, you know? Nothings changed about me, except that I am wiser, way more!!!I awm still me , except that I sit instead of stand, and other people's perceptions (some) of me have changed. :) 8O :( :evil: :roll:
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Re: hope

Postby thornyrose76 » Fri Nov 27, 2009 1:33 pm

I took betaseron for years until I stopped, the MS neurologist finally STATING out loud: "well it doesn't seem to be working." A nurse informed meabout 2 years ago that the injection drugs weren't as effective as everyone had hoped they would turn out to be... implying not just in regards to me but for many people.
GiCi wrote:thornyrose76,
Before Zamboni's discovery there was no hope for us: interferon, prednisolone, stem cells and many other drugs failed to deliver a real improvement in MS.
Now CCSVI theory has finally given us a real possibility of defeating this horrible condition and we should keep our hopes sky-high, in spite of the present opposition to it mounted by most neurologists.
Evidence is accumulating and the treatment of CCSVI will in time become widespread.
You are suffering and your impatience is understandable, but rest assured that your day will come.

GiCi
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Postby Sharon » Fri Nov 27, 2009 2:41 pm

Thornyrose

Bluesky wrote
I have definitely seen that there can be a tendency for professionals to "give up" on those of us with challenging MS, or to let us slip away into further disability. Or we can do it to ourselves. The truth is, we can still keep working on our health, we can still get out and live, and we can stay in our best condition so we'll be ready when a procedure or treatment is available!


DITTO!

It sounds like there are going to be some options for you in Canada. Get yourself on a waiting list for future studies - your treatment could be free!

Sharon
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