Hopkins video

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Hopkins video

Postby Lyon » Fri Jan 21, 2011 4:20 pm

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Postby msmything » Thu Feb 10, 2011 7:47 pm

Hey Bob,

Very cool video..

It's kinda wierd that they refer to it as HiCy though isn't it?
Be kinder than necessary, for everyone you meet is fighting some kind of battle..
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Postby Frank » Sat Feb 12, 2011 6:19 am

While this video looks impressive at first glance, I think reality does not look like that. I mean people here on this board who got this HiCy treatment did not have these alegedly great experience. And while it is not clear what the date of that video is I think 30 patients with 20 being followed for at least 12 month seems humbling. And 12 month follow up is not that much telling in terms of MS progression.

--Frank
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Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Re: cool

Postby Lyon » Sat Feb 12, 2011 6:37 am

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Postby Lyon » Sat Feb 12, 2011 7:36 am

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Hopkins Video

Postby Shawn » Sat Feb 12, 2011 11:26 am

My husband and I have actually heard the person in the video speak at an MS function and my husband, Mark, met him and spoke with him. He says that he was deteriorating quickly and decided to go into the study. He indicated that he was in bad shape and has gotten so much better that he is actually now employed as an MRI tech! It is regrettable that it would appear this treatment could be so beneficial but that pharmaceutical companies appear reluctant to participate due to not being able to recoup their investment. This seems to me that perhaps they are concerned that this drug would be so beneficial that it would reduce the amount of sales of drugs that are meant to keep the disease at bay and are administered on a daily or weekly basis and therefore generate far more revenue for those companies. What a shame.
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Re: Hopkins Video

Postby Lyon » Sat Feb 12, 2011 11:48 am

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Re: Hopkins Video

Postby steven73 » Sat Feb 12, 2011 12:36 pm

Shawn wrote:My husband and I have actually heard the person in the video speak at an MS function and my husband, Mark, met him and spoke with him. He says that he was deteriorating quickly and decided to go into the study. He indicated that he was in bad shape and has gotten so much better that he is actually now employed as an MRI tech!


The guy in the video was one of the first treated and is definitely one of the star pupils. He was hit with MS aggressively at a young age and was treated within months of the process becoming obvious. As a layperson, I've wondered if something as extreme as HiCy could be a great induction therapy for aggressive cases of MS to sort of "flush" the rogue elements from the immune system and give the standard therapies a better change of working. I am a HiCy dunce story but I think I was on the verge of SPMS when I was treated. I'm glad I had the chance to try this.
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Re: Hopkins Video

Postby Lyon » Sat Feb 12, 2011 1:12 pm

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Postby LR1234 » Sat Feb 12, 2011 2:08 pm

Yes Steve, I agree with Lyon...I would be interested in hearing your story/Symptoms/treatment/outcome x
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Postby steven73 » Sat Feb 12, 2011 9:38 pm

Hey folks. Unfortunately for me, I wasn't diagnosed until I was years into the relapsing process at about the age of 32. I started experiencing retinitis at around the age of 21 that I'm told was the first episodes of the MS. The relapse that got me diagnosed left me with walking deficits as the disease has affected my eyes and to a larger extent, my spinal cord. Long story short, after three years of Betaseron, Tysabri, pulse Cytoxan and Copaxone, I could still walk with two AFOs but it wasn't pretty. I still had significant waxing and waining of symptoms (responded to steroids as well) and occasions that felt like attacks on top of progression when I was treated with HiCy during the Summer of 2008. I can't say that I remember feeling too much better at first but my first three month check up showed clinical improvements. A few months later, I started experiencing some falls and about at about the seven or eight month mark, I gave into the crutches that I'd been needing. About a year and a half out, I started using a wheel chair for any real distance and primarily use it all the time now but I can still support my weight briefly and walk short distances with crutches.

I don't think HiCy failed me or caused me to worsen. It was just too late to help me and my spinal cord had taken a beating by the time I tried the treatment. A doctor at Duke once remarked that the spinal cord has no sense of humor but the brain can take a joke to an extent. It was the biggest stick on the playground and at the time, there was much excitement about it and I'm glad I tried it. I'm almost oddly nostalgic for that time period because it was the only treatment about which I ever thought "this might be the one." The excitement of traveling to Baltimore and being treated at a superb hospital like Hopkins added to it.
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Postby Lyon » Sat Feb 12, 2011 9:55 pm

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Postby LR1234 » Sun Feb 13, 2011 4:17 am

Me too. I am sorry to hear what has happened.

I have a lot of issues with my eyes as well (retina thinning seen on OCT) but no sign of optic neuritis when they look into my eyes they look normal. How did retinitis present itself? and were they able to see it by looking at the back of your eyes?

I have had MS since I was 17 but I was only diagnosed 2 years ago (aged 31). My eyes and sensory issues are my major probs. I still do relapse and will def look into Revimmune once I have had children. If not that I will look into campath and stemcells.

Is there nothing the dr's can give you now to help? Other than drugs have you tried fish oils, aspirin, Vit D, Zinc, LDN supps?? or any special diets (gluten/dairy/low fat)???

Thanks for sharing your story
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Postby steven73 » Sun Feb 13, 2011 7:59 am

My optic nerves have also been normal. When I was 21, my vision became milky white, primarily in my left eye. I could still see but it was like a heavy fog. Pred Forte eye drops cleared it up each time and it really never seemed like a big deal as my vision remained mostly correctable to 20/20. Yes, they eye docs were able to see it very easily.

My regular neurologist has told me that she, if it were her, she would continue taking Betaseron as patients have used it for SPMS. My layperson's opinion is that the autoimmunity does not completely disappear when past the relapsing phase of the disease so it could be an ounce of prevention type of thing. I had psoriasis in the back of my head before HiCy and that has returned although not quite as intense so I believe I am still autoimmune.

My vitamin D levels were very, very low and that has been corrected. I recently chatted via Facebook with a doctor who has had very stable MS for 15 years, has relied solely on diet and does not buy into the solely autoimmune theory of MS. That has caused me to be more interested in the diets but I haven't tried them. However, I have been a low fat vegetarian for almost as long as I can remember.

Good luck with whichever treatments you try. One HiCy patient on this board had a baby after HiCy, and she did it twice.

LR1234 wrote:Me too. I am sorry to hear what has happened.

I have a lot of issues with my eyes as well (retina thinning seen on OCT) but no sign of optic neuritis when they look into my eyes they look normal. How did retinitis present itself? and were they able to see it by looking at the back of your eyes?


I have had MS since I was 17 but I was only diagnosed 2 years ago (aged 31). My eyes and sensory issues are my major probs. I still do relapse and will def look into Revimmune once I have had children. If not that I will look into campath and stemcells.

Is there nothing the dr's can give you now to help? Other than drugs have you tried fish oils, aspirin, Vit D, Zinc, LDN supps?? or any special diets (gluten/dairy/low fat)???

Thanks for sharing your story
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Cytoxan

Postby lindagrace » Thu Apr 14, 2011 4:30 pm

Frank wrote:While this video looks impressive at first glance, I think reality does not look like that. I mean people here on this board who got this HiCy treatment did not have these alegedly great experience. And while it is not clear what the date of that video is I think 30 patients with 20 being followed for at least 12 month seems humbling. And 12 month follow up is not that much telling in terms of MS progression.

--Frank

Hey Frank~
I received treatment the Cytoxan July 2008. I got Diagnosed in Sept. 1996 and I was in a wheelchair by the time of treatment.

I got back on the copaxone at Kerr's strong encouragement. He said that the majority of patients that didn't get back on Copaxone had symptoms, so I did.

Do you have MS?
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