help .primary progressive multiplescelrosis

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help .primary progressive multiplescelrosis

Postby gallery23 » Fri Mar 08, 2013 11:56 pm

I have recently been diagnosed with primary progressive ms. Devastated just finding out what this is all about..
Any advice for a cure ????????

I live in Ireland but can travel, can anybody advise on a procedure that can help close to Ireland, or anything else to help??? HELP!
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Re: help .primary progressive multiplescelrosis

Postby jimmylegs » Sat Mar 09, 2013 7:35 am

weird i was certain i had answered you..

anyway welcome.

re your first question, try the ccsvi area of the site and you may get a better response.

re any treatments, have you looked at nutrition at all? if you would like me to link you up to resources just say.

in the meantime, excerpts from a recent study:

Dietary patterns in clinical subtypes of multiple sclerosis: an exploratory study (2009)
http://www.nutritionj.com/content/8/1/36
"Compared to Dutch population the intake of the following nutrients was significantly lower in MS patients: protein (p < 0.002), SAFA (p = 0.002), MUFA (p < 0.002), total fat (p = 0.005), cholesterol (p = 0.01), folic acid (p < 0.002), magnesium (p = 0.002) and copper (p = 0.01). Compared to the daily recommended allowance it was found that the intake of folic acid, magnesium, zinc, copper and selenium in MS patients is below the daily recommendation (Additional file 1.). Total energy intake was lower in the MS group than in the Dutch population (p < 0.05). ...From this exploratory study we found differences in magnesium, calcium and iron intake between subgroups of MS patients that may possibly be related to MS disease progression. This is important because no effective neuroprotective treatment is currently available for MS patients."

hmm very interesting that across the board, zinc intakes in patients AND controls was barely half of the rda (which is only 15mg anyway). and that's before controlling for absorption zinc issues d.t. phytate, gluten, etc. it would be very interesting to follow up on this aspect.. perhaps liver biopsy to compare hepatic zinc stores, in addition to serum zinc levels in the various groups.
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Re: help .primary progressive multiplescelrosis

Postby lyndacarol » Sat Mar 09, 2013 8:10 am

Welcome to ThisIsMS, gallery23.

You say that you "live" in Ireland – if you grew up there and attended school there, you may be interested in the following research on the BCG vaccine:

I am on the mailing list of Dr. Denise Faustman, a Harvard University researcher working on a cure for type I diabetes. She has triggered increased insulin production from trial participants with previously non-producing pancreas. In her fall letter were links giving more information on her work: http://www.myfoxboston.com/story/192352 ... t-diabetes

Here is a Bloomberg article with more details: http://www.bloomberg.com/news/2012-08-0 ... or-tb.html

Dr. Faustman is also doing research on MS and thinks the BCG vaccine will help, but I do not agree – because of a friend's experience. My friend grew up in Ireland where she moved around often and attended several schools; a BCG vaccine was required at each new school (the BCG vaccine is required of school-age children in the UK)– she thinks she has received the BCG vaccine four times. She now has MS.

I think the increased insulin Dr. Faustman has found to be triggered by the BCG vaccine will make MS worse. This vaccine uses attenuated (weakened), i.e., live bacteria. Is it possible that BCG (bacillus Calmette-Guérin) continues to live in the body and is NOT eliminated by antibodies, OR that the bacterium changed the pancreas into chronically overproducing insulin? I think this BCG vaccine could be responsible for many cases of MS because it increases insulin production.

I recently came across the following article with its mention of BCG vaccine ("playing" with the insulin "team" – metabolic syndrome, diabetes, etc.): http://www.ncbi.nlm.nih.gov/pubmed/22934546
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: help .primary progressive multiplescelrosis

Postby Vikingquest » Sat Mar 09, 2013 8:50 am

There is one answer for you, it's not CCSVI, it's called HSCT. Hematopoetic stem cell transplant. It's a chemo and stem cell transplant procedure and it's your best bet. It's in phase 3 trials in the US and has been rigorously tested so far. It has a 65% ish success rate in progressive MS. That might sound low for the cost (it's expensive) but there is literally nothing else for PPMS. Please don't listen to CCSVI proponents, the data is coming out every day that while veins are affected by MS, There is no scientifically reproducible data which suggests that getting the procedure done will benefit you at all. Always trust the science, not the stories you may hear here...

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Re: help .primary progressive multiplescelrosis

Postby gallery23 » Sat Mar 09, 2013 9:17 am

Vikingquest wrote:There is one answer for you, it's not CCSVI, it's called HSCT. Hematopoetic stem cell transplant. It's a chemo and stem cell transplant procedure and it's your best bet. It's in phase 3 trials in the US and has been rigorously tested so far. It has a 65% ish success rate in progressive MS. That might sound low for the cost (it's expensive) but there is literally nothing else for PPMS. Please don't listen to CCSVI proponents, the data is coming out every day that while veins are affected by MS, There is no scientifically reproducible data which suggests that getting the procedure done will benefit you at all. Always trust the science, not the stories you may hear here...

VQ

Thank you for your post, HSCT interesting... WHERE CAN I FIND MORE INFO... can u be a bit more specific about why not CCSVI do you have personal knowledge with this procedure for PPMS? Thanks
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Re: help .primary progressive multiplescelrosis

Postby jimmylegs » Sat Mar 09, 2013 10:25 am

note - the 2009 study cited above indicates potential for nutrition therapy in PPMS specifically as well as MS patients in general.

G: if you are curious about pros and cons of CCSVI, you can check out the announcements in the CCSVI forum, which include topics detailing both positive and negative experiences. i have no personal xp with CCSVI.
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Re: help .primary progressive multiplescelrosis

Postby gallery23 » Mon Mar 11, 2013 4:32 am

Vikingquest wrote:There is one answer for you, it's not CCSVI, it's called HSCT. Hematopoetic stem cell transplant. It's a chemo and stem cell transplant procedure and it's your best bet. It's in phase 3 trials in the US and has been rigorously tested so far. It has a 65% ish success rate in progressive MS. That might sound low for the cost (it's expensive) but there is literally nothing else for PPMS. Please don't listen to CCSVI proponents, the data is coming out every day that while veins are affected by MS, There is no scientifically reproducible data which suggests that getting the procedure done will benefit you at all. Always trust the science, not the stories you may hear here...

VQ


Thank you for your post.
The HSCT sounds interesting do you have any news on timeframe as to when this will be available.

As i live in Ireland this would also be difficult to access if it is only in the USA.

In the meantime, being proactive, exactly why do you say CCSVI is not the answer.? for PPMS.

Sorry to press you on this but need to know the correct answer to this question as there is nothing else out-there.

Thank you...................
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Re: help .primary progressive multiplescelrosis

Postby Chilax » Mon Mar 11, 2013 8:58 am

https://www.facebook.com/#!/groups/149103351840242/

The link above is to a Facebook group pertaining to stem cell transplants (HSCT) for MS and other auto-immune-mediated diseases. Many members, including myself, have had a stem cell transplant. I had mine during August '11 in Chicago. Many members had their own procedure in various other countries in Europe, India, Russia, Canada, South Africa and Israel. The website contains a plethora of valuable information at the top of the page (see 'docs') including various blogs from the members detailing theie HSCT process.
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Re: help .primary progressive multiplescelrosis

Postby marcstck » Mon Mar 11, 2013 11:43 am

Sorry to hear about your diagnosis. PPMS is a difficult disease both on the patient and the people trying to treat it.

That said, CCSVI treatment for people with PPMS generally does not result in dramatic improvements. Of course, there are some exceptions, but, as the writer of the popular MS blog wheelchair kamikaze, I'm in touch with many patients and most PPMS patients who have undergone CCSVI treatment report only minor benefits, if any. The CCSVI treatment procedure is a work in progress, and much still needs to be learned.

As for HSCT, most legitimate programs only accept patients with active CNS inflammation, and PPMS is noted for its lack of active inflammation. I believe the progressive patients that have shown benefits are secondary progressive patients still experiencing relapses. I myself was rejected for such treatment because of my lack of CNS inflammation, and I know of others who have had the same experience. Active inflammation is evidenced by the presence of enhancing lesions on MRI images.

Sorry, I don't want to be the bearer of bad news, but as of now PPMS is a difficult animal to tame. There is some thought that PPMS may even be a completely different disease then the other forms of MS. It strikes men and women in equal numbers, generally appears later in life, and, as noted above, does not exhibit the high levels of inflammation in the CNS that is seen in the other forms of MS. In addition, patients usually have less lesions but more disability, and there is a much higher prevalence of spinal lesions In PPMS than in the relapsing forms of MS. The idea that it is a different disease is not a universally held believe, and is a topic of much debate in the medical circles.

The progressive forms of MS are finally getting the attention of researchers, after largely being ignored for many decades. I'm hopeful that effective treatments will be developed in the future, however, for now, unfortunately modern medicine has little to offer those of us with progressive MS. You might be interested in a blog entry I wrote a little while ago, about a treatment that has shown some efficacy for progressive MS patients, intrathecal methotrexate. Here's the link:

http://www.wheelchairkamikaze.com/2013/ ... t-for.html

This treatment is also controversial, but the few studies done (not blinded, placebo controlled studies, though) have demonstrated efficacy in treating progressive MS. Full disclosure: my Neurologist is the primary researcher behind the research on intrathecal methotrexate. The treatment did not work for me, but I am a very bad patients to use as an example, because my disease is very atypical. So atypical, in fact, that it might not even being MS.

You might want to check out the blog "enjoying the ride", written by PPMS patient who has experienced a stabilization of his progression after undergoing intrathecal methotrexate therapy…

http://www.enjoyingtheride.com/2012/12/ ... rking.html
Last edited by marcstck on Mon Mar 11, 2013 2:16 pm, edited 1 time in total.
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Re: help .primary progressive multiplescelrosis

Postby Scott1 » Mon Mar 11, 2013 12:08 pm

Contact these people for advice about who does similar work in your part of the world.

http://www.msstemcell.com/

Regards
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Re: help .primary progressive multiplescelrosis

Postby HarryZ » Mon Mar 11, 2013 2:01 pm

Vikingquest wrote:There is one answer for you, it's not CCSVI, it's called HSCT. Hematopoetic stem cell transplant. It's a chemo and stem cell transplant procedure and it's your best bet. It's in phase 3 trials in the US and has been rigorously tested so far. It has a 65% ish success rate in progressive MS. That might sound low for the cost (it's expensive) but there is literally nothing else for PPMS. Please don't listen to CCSVI proponents, the data is coming out every day that while veins are affected by MS, There is no scientifically reproducible data which suggests that getting the procedure done will benefit you at all. Always trust the science, not the stories you may hear here...

VQ


As another reader pointed out, HSCT would not be considered for this person as Gallery23 likely doesn't qualify for the experimental treatment. Not sure it is a good idea as well to advise newcomers not to try CCSVI. While CCSVI doesn't appear to work that well on PPMS patients, it may be something that possibly could provide some relief since the hugely expensive HSCT isn't an option.

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Re: help .primary progressive multiplescelrosis

Postby marcstck » Mon Mar 11, 2013 2:18 pm

HarryZ wrote:
Vikingquest wrote:There is one answer for you, it's not CCSVI, it's called HSCT. Hematopoetic stem cell transplant. It's a chemo and stem cell transplant procedure and it's your best bet. It's in phase 3 trials in the US and has been rigorously tested so far. It has a 65% ish success rate in progressive MS. That might sound low for the cost (it's expensive) but there is literally nothing else for PPMS. Please don't listen to CCSVI proponents, the data is coming out every day that while veins are affected by MS, There is no scientifically reproducible data which suggests that getting the procedure done will benefit you at all. Always trust the science, not the stories you may hear here...

VQ


As another reader pointed out, HSCT would not be considered for this person as Gallery23 likely doesn't qualify for the experimental treatment. Not sure it is a good idea as well to advise newcomers not to try CCSVI. While CCSVI doesn't appear to work that well on PPMS patients, it may be something that possibly could provide some relief since the hugely expensive HSCT isn't an option.

Harry


Agreed, but I would also seriously suggest looking into intrathecal methotrexate, which does appear to have some real efficacy. See my previous comment, and check out the provided links, above...
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Re: help .primary progressive multiplescelrosis

Postby jmd2782 » Tue Mar 12, 2013 4:06 am

Marc, Have you had any experience with LDN? I have read your blog. I love it and I love the photography.
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Re: help .primary progressive multiplescelrosis

Postby want2bike » Tue Mar 12, 2013 6:02 am

Have your vitamin D level check. Low vitamin D has been linked to MS. Get on the paleo diet which is the closes thing I have seen to a cure.

http://www.direct-ms.org/rogermcdougall.html

http://www.youtube.com/watch?v=yhUuf2QZd_E
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Re: help .primary progressive multiplescelrosis

Postby marcstck » Tue Mar 12, 2013 7:21 am

jmd2782 wrote:Marc, Have you had any experience with LDN? I have read your blog. I love it and I love the photography.

Thanks for the kind words about my blog. I have tried LDN, early in my MS career. It really didn't do anything for me. These days, I can't take it, because I am on opioid painkillers due to the destruction of my hips and shoulders from intravenous steroids, a condition called avascular necrosis.

Yes, the AVN really sucks…
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