MS and Stem Cell Therapy

MJClare · 01-17-2012, 09:49 PM

Dr Young : I follow your work closely as my daughter (MacKenzie) is spinal cord injured from a motor vehicle accident and our family has met you in our travels.
My question today however has to do with our friend who is 52 years old and for some time has had MS but some of the complications are getting worse and he is feeling somewhat desparate to try some sort of therapy to slow or reverse the effects of his disease. He is currently diagnosed with relapsing-remitting MS. He has been surfing the web and discovered all of the elaborate websites with promises of stem cell cures or stopping progression. He looked at a location in Panama but he changed his mind based on the skepticism of his friends/family.
His current medication is Avonex, Ampyra, and Crestor.
My question to you is given his situation are you aware of any aggressive (and legitimate) opportunities for therapies out there that my friend could benefit from. Would probably prefer to stay within the US rather than wander about the globe if possible.
Again we highly regard your opinion so any advice would be greatly appreciated..
Mark Clare

MSWIFE1 · 01-17-2012, 11:00 PM

Just wondering what the complications are that are getting worse? Also how long he has been on each of the listed meds. Crestor is for cholesterol and can actually cause muscle weakness. Not saying that Crestor is making it worse but it could be possible if he hasn't been on it that long that may be contributing to the feeling of his MS worsening.

S. Becker · 01-17-2012, 11:36 PM

You and your friend have my sympathies.
I don't know of any specific treatments, but I do know MS can be a pretty brutal health problem.

I have had experience with this one website that gives basics as to how stem cells get stored and supplied. http://www.cellbanking.net/Cell_Banking_FAQ.htm
If you are looking at places it might be good to ask them lots of questions about how they keep them and/or where they get them, to make sure it's all legit.
You might also want to look at local laws regarding stem cell research, some states treat the issue differently with embryonic stem cells and such and as a result more or less might be available in that state.

MJClare · 01-19-2012, 10:28 PM

His balance seems to be getting worse and his dexterity on the right side hand/arm and leg as well. He sometimes walks with a cane (but he probably should all the time but too proud still for that). He has had bouts of dizziness.
Thanks for the tip regarding Crestor..I will certainly pass that along

spinalMS · 01-19-2012, 10:59 PM

Check out clinicaltrials.gov to start. A number of U.S. universities have had clinical trials utilizing adult stem cells for MS. A biotechnology company in Cleveland, OH called Athersys, is supposed to begin a clinical stem cell trial for progressive forms of MS sometime in 2013. Eventually, they will also have trials for stroke, Parkinsons and other neurological issues. The Mellen center for MS research and treatment at Cleveland Clinic, has started a clinical trial using stem cells as well. They have very stringent criteria to meet however, and have admitted only a few people. I think that one has had to have attacks of optic neuritis to even be considered. They are working in tandem with the Myelin Repair Foundation research scientists who are located at Case Western Reserve University. The Myelin Repair Foundation is planning to begin a phase 1 clinical trial some time in 2014 for MS. Undoubtedly, there are many other trials in the pipeline.

FellowHawkeye · 01-24-2012, 12:14 AM

Welcome to the site. Don't know where your friend lives in the US, but maybe he could get Sativex prescribed. It's cannabis-based oral spray and I wish very much I could get it for my ms-like spasticity. It could very well be just what your friend needs. Hope it is!

Jan

ineedmyelin · 01-24-2012, 12:37 AM

Quote:

Originally Posted by FellowHawkeye

Welcome to the site. Don't know where your friend lives in the US, but maybe he could get Sativex prescribed. It's cannabis-based oral spray and I wish very much I could get it for my ms-like spasticity. It could very well be just what your friend needs. Hope it is!

Jan

Nothin like the real thang............

Wise Young · 01-24-2012, 05:09 AM

Quote:

Originally Posted by MJClare

Dr Young : I follow your work closely as my daughter (MacKenzie) is spinal cord injured from a motor vehicle accident and our family has met you in our travels.
My question today however has to do with our friend who is 52 years old and for some time has had MS but some of the complications are getting worse and he is feeling somewhat desparate to try some sort of therapy to slow or reverse the effects of his disease. He is currently diagnosed with relapsing-remitting MS. He has been surfing the web and discovered all of the elaborate websites with promises of stem cell cures or stopping progression. He looked at a location in Panama but he changed his mind based on the skepticism of his friends/family.
His current medication is Avonex, Ampyra, and Crestor.
My question to you is given his situation are you aware of any aggressive (and legitimate) opportunities for therapies out there that my friend could benefit from. Would probably prefer to stay within the US rather than wander about the globe if possible.
Again we highly regard your opinion so any advice would be greatly appreciated..
Mark Clare

Mark,

As you know, multiple sclerosis (or at least it is believed to be) is an autoimmune disease. The remitting-relapsing form of the condition can be held at bay with the so-called interferon drugs, high-dose steroids at the time of a relapse, and Ampyra to improve strength and reduce fatigue.

One way of treating multiple sclerosis is to replace the bone marrow. The bone marrow is ablated by chemotherapy and then replaced with either bone HLA-matched bone marrow from a relative or from umbilical cord blood. The new blood and immune cells hopefully then stops attacking myelin.

At present, unfortunately, bone marrow replacement still has a relatively high mortality rate of 10-20%. Therefore, this treatment is usually not suggested unless the patients are not responding to the interferon and anti-inflammatory therapies or have the chronic progressive of the disease.

Progress is being made in bone marrow transplants, however. Both the mortality and morbidity rates for bone marrow replacements have been declining over the past decades. Reduced intensity myeloablation has less side effects and mortality rates of cord blood transplants are lower.

While bone marrow transplants are stem cell therapies, I suspect that your friend is referring to other kinds of stem cell therapies, that some claim will remyelinate axons. There is no evidence that any "stem cell therapy" remyelinate the spinal cord and restores function in people with MS.

There was hope of course that the oligodendroglial precursor cells derived from embryonic stem cells from Geron might prove to be safe and will remyelinate cells. Unfortunately, they folded that portion of their operation and stopped the spinal cord injury trial.

Stem Cell Inc. and Neuralstem Inc. are testing human fetal stem cell lines that work in spinal cord injury. If their trials show that the therapies are safe and perhaps improve function in spinal cord injury, it is likely that they will also do trials in multiple sclerosis.

Please note that MS does not just cause demyelination. Much evidence suggest that MS also damages axons. So, remyelination alone may not restore function. Regeneration may be necessary. As you know, from other parts of CareCure, there are trials of therapies to regenerate the cord.

In the meantime, there are many overseas clinics that are claiming all sorts of benefits from autologous bone marrow cell transplants, unmatched allogeneic umbilical cord blood infusions, and even purported "embryonic stem cells" for MS, if you pay exorbitant amounts. I urge your friend to avoid these. They are scams.

By the way, I am moving this to the appropriate forum for further discussion.

Wise.

MJClare · 01-29-2012, 02:06 PM

Thank you for the info and insight
Mark

willingtocope · 01-29-2012, 03:41 PM

Anecdoteably (is that a word?), I personally have had 3 instances, months apart, where 2 or 3 doses of Crestor set off MS like spasticy to the extent that I couldn't get out of bed.

After discussion with my cardiologist, I now take 1000mg Niacin, twice daily to control chloresteral. My HDL has increased to 65 (it was never above 40 on any of the statins), and LDL is at 100. Niacin does cause a "flush" feeling about an hour or so after taking it, but for me, its tolerable. Avoid the 'non-flush" variety.

01-17-2012, 09:49 PM	#1
MJClare Junior Member Join Date: Jan 2012 Posts: 3	MS and Stem Cell Therapy Dr Young : I follow your work closely as my daughter (MacKenzie) is spinal cord injured from a motor vehicle accident and our family has met you in our travels. My question today however has to do with our friend who is 52 years old and for some time has had MS but some of the complications are getting worse and he is feeling somewhat desparate to try some sort of therapy to slow or reverse the effects of his disease. He is currently diagnosed with relapsing-remitting MS. He has been surfing the web and discovered all of the elaborate websites with promises of stem cell cures or stopping progression. He looked at a location in Panama but he changed his mind based on the skepticism of his friends/family. His current medication is Avonex, Ampyra, and Crestor. My question to you is given his situation are you aware of any aggressive (and legitimate) opportunities for therapies out there that my friend could benefit from. Would probably prefer to stay within the US rather than wander about the globe if possible. Again we highly regard your opinion so any advice would be greatly appreciated.. Mark Clare

01-19-2012, 10:28 PM	#4
MJClare Junior Member Join Date: Jan 2012 Posts: 3	Friends worsening MS conditions His balance seems to be getting worse and his dexterity on the right side hand/arm and leg as well. He sometimes walks with a cane (but he probably should all the time but too proud still for that). He has had bouts of dizziness. Thanks for the tip regarding Crestor..I will certainly pass that along

01-24-2012, 12:14 AM	#6
FellowHawkeye Senior Member Join Date: Oct 2001 Location: Lincoln, NE, USA Posts: 197	Mark Welcome to the site. Don't know where your friend lives in the US, but maybe he could get Sativex prescribed. It's cannabis-based oral spray and I wish very much I could get it for my ms-like spasticity. It could very well be just what your friend needs. Hope it is! Jan

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01-17-2012, 11:00 PM	#2
MSWIFE1 Senior Member Join Date: Sep 2007 Location: Fithian, IL Posts: 1,852	Just wondering what the complications are that are getting worse? Also how long he has been on each of the listed meds. Crestor is for cholesterol and can actually cause muscle weakness. Not saying that Crestor is making it worse but it could be possible if he hasn't been on it that long that may be contributing to the feeling of his MS worsening.

01-17-2012, 11:36 PM	#3
S. Becker Junior Member Join Date: Jan 2012 Location: Austin, TX Posts: 5	You and your friend have my sympathies. I don't know of any specific treatments, but I do know MS can be a pretty brutal health problem. I have had experience with this one website that gives basics as to how stem cells get stored and supplied. http://www.cellbanking.net/Cell_Banking_FAQ.htm If you are looking at places it might be good to ask them lots of questions about how they keep them and/or where they get them, to make sure it's all legit. You might also want to look at local laws regarding stem cell research, some states treat the issue differently with embryonic stem cells and such and as a result more or less might be available in that state.

01-19-2012, 10:59 PM	#5
spinalMS Junior Member Join Date: Mar 2010 Posts: 1	Check out clinicaltrials.gov to start. A number of U.S. universities have had clinical trials utilizing adult stem cells for MS. A biotechnology company in Cleveland, OH called Athersys, is supposed to begin a clinical stem cell trial for progressive forms of MS sometime in 2013. Eventually, they will also have trials for stroke, Parkinsons and other neurological issues. The Mellen center for MS research and treatment at Cleveland Clinic, has started a clinical trial using stem cells as well. They have very stringent criteria to meet however, and have admitted only a few people. I think that one has had to have attacks of optic neuritis to even be considered. They are working in tandem with the Myelin Repair Foundation research scientists who are located at Case Western Reserve University. The Myelin Repair Foundation is planning to begin a phase 1 clinical trial some time in 2014 for MS. Undoubtedly, there are many other trials in the pipeline.

01-29-2012, 02:06 PM	#9
MJClare Junior Member Join Date: Jan 2012 Posts: 3	Thank you for the info and insight Mark

01-29-2012, 03:41 PM	#10
willingtocope Senior Member Join Date: Jun 2010 Location: Pleasant Hill Iowa Posts: 684	Anecdoteably (is that a word?), I personally have had 3 instances, months apart, where 2 or 3 doses of Crestor set off MS like spasticy to the extent that I couldn't get out of bed. After discussion with my cardiologist, I now take 1000mg Niacin, twice daily to control chloresteral. My HDL has increased to 65 (it was never above 40 on any of the statins), and LDL is at 100. Niacin does cause a "flush" feeling about an hour or so after taking it, but for me, its tolerable. Avoid the 'non-flush" variety.