A CCSVI Patient Log: All About Steve

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

Joyce and Steve

Postby Dovechick » Wed Jan 27, 2010 11:04 pm

Hy Joyce, so pleased to hear that all went well and that Steve's edss has come down by half a point, at this stage half a point makes a big difference to your daily life. I gather from that there has been no sign of back sliding etc...
Great, Ella and Dan and me are off in a couple of weeks to have the procedure done and I am busy busy in a UK pressure group trying to get the authorities and the NHS to take notice. I think we stand a better chance now that CCSVI has been classed as a congenital defect. All they have to do now is link it to the symptoms it produces in MS patients and VOILA..
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby mormiles » Tue Feb 23, 2010 9:53 am

Michele, Mutley, et al,

This is something for you to stick in the back of your minds. Since Steve's CCSVI treatment at the end of September, he and I have been through round after round of respiratory infections. The effect on Steve has been that he would be done with the acute respiratory symptoms fairly quickly, but then, his MS symptoms would be exacerbated for weeks. He even experienced about 3-1/2 weeks of suddenly much worse walking ability due to his "bad" right leg and foot going extremely weak and slow. That was accompanied by sciatic pain for the first 3 days of the episode. Sciatic pain was one of his bad symptoms for a few years beginning in 1998, but has since dulled down to a very low level unease.

The doctor who treats Steve changed his B12 shots to include more folinic acid and to include some hydroxocobalamin with the methylcobalamin. He seems to be improving again. We'll see how this plays out.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Steve

Postby Dovechick » Tue Feb 23, 2010 2:44 pm

Oh, I know the feeling of those dreadful respiratory viruses that won't go away.

And I don't have MS...
Hope things look up for your soon.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby Vhoenecke » Wed Feb 24, 2010 3:51 pm

Is Steve noticing anything positive with the treatment?
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Postby jimmylegs » Tue Mar 02, 2010 5:43 am

nacho, the kind of attitude demonstrated in your post is not well received at TIMS. please tone it down.
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Postby jimmylegs » Tue Mar 02, 2010 5:49 am

joyce are you and steve on any sort of nutritional or supplement regimen? all those infections are making me think ACESZ for both of you :)
(vit A, vit C, vit E, Se, and Zn)
the zinc might help with the ED too. it boosts testosterone and zinc is on average low in ms patients too.
try google searching zinc erectile dysfunction and have a glance over the list of results.
just let me know if you want any info on nutrient sources, preferred supplement forms, dosing, optimal levels, etc.
HTH
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Postby Johnnymac » Tue Mar 02, 2010 6:19 am

edit....thanks jimmy
Last edited by Johnnymac on Tue Mar 02, 2010 8:15 pm, edited 1 time in total.
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Postby Vhoenecke » Tue Mar 02, 2010 6:45 am

How do we get a hold of a mod to remove the comment? I can't believe I read that!
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Postby patientx » Tue Mar 02, 2010 7:36 am

NHE and Jimmylegs are the volunteer moderators - send either of them a private message, and I'm sure it will be addressed.

Pretty sad when someone had so little going on in life, that he needs to get thrills by posting insulting messages on a patient website.
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Postby costumenastional » Tue Mar 02, 2010 7:52 am

...
Last edited by costumenastional on Wed Mar 03, 2010 3:52 am, edited 2 times in total.
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Postby jimmylegs » Tue Mar 02, 2010 5:25 pm

costume, responding in that way to inflammatory posts doesn't make things better. please, ignore posts like that rather than putting TIMS readers through a flame war.
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Postby costumenastional » Wed Mar 03, 2010 3:52 am

You are right. Please, forgive me.
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Postby jimmylegs » Wed Mar 03, 2010 5:15 am

thanks for editing it out, costume :)
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Postby costumenastional » Wed Mar 03, 2010 5:20 am

Dont mention it Jimmy. I just couldnt believe what i was reading you know? It hit me like a brick but i should think better before acting.

It wont happen again, that s a promise.

For all i care is for Steve's well being.
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Postby mormiles » Wed Mar 03, 2010 3:44 pm

Wow! I missed all the nastiness---thanks for the clean-up dear moderator!

Thanks for your concern, but we are both very well supplemented. Our respective regimes are based on doctor's recommendations, years of research, and years of trial and error. And yes, it costs an arm and a leg!

Steve is doing so-so. One thing everyone reading this thread should keep in mind is that Steve has probably had MS longer than any other patient on this forum---45+ years. He has SPMS, and that is the category of MS patient who benefits the least from CCSVI treatment. Also, whatever longterm benefits he may receive will be slow to come. So, he is at the far end of the spectrum, and nobody considering CCSVI treatment should include his short-term outcome amongst their criteria for making a judgment.

Thanks everyone.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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