This Is MS Multiple Sclerosis Knowledge & Support Community

I am so, so sick of this. I am 29, have SPMS, cannot walk, have lost so much of my vision. hands are tarting to tingly, am freezing cold all of the time… this cannot be life.

I've seen the youtube stem cell people, the 60 minutes Australia interviews with patients who cano now walk again, one 5 year video blog of a woman who was as bad as me and now is healthy.

Is this what the skeptics say 'stem cell advocates taking advantage of our vulnerability'?Because there is no cure. It seems to make a lot of sense that it works. It seems to be a few random people, not actors, who have come forward saying 'i just couldn't do the treatment, no success anymore, so went "radical"'.

I am really considering doing it. I cannot lose any more functions. I have three kids and I (asa I am sure all of you did!) had a future ahead of me. THis cannot be it - to slowly die but stay alive.

Anyone have first hand experience with stem cell treatment, positive or negative, that they would like to share with me? I would love to hear it from someone. I would like to think that those who did it are not visiting MS forums anymore, that they are off climbing mountains, running up stairs, but….

Any insight/information/experiences would be so appreciated.

Sorry for the downing post. It has been one of those days. You know… a normal day.

Hi inshaallah,

There is a stem cell sub forum here @ http://www.thisisms.com/forum/stem-cells-f25/ You will find a couple of personal experiences there but not many. If you Facebook (I don't), there is an hsct forum that I'm guessing has most of the recent stem cellers on it with details of protocols and experiences. I just google "hsct and multiple sclerosis" to read up on it. There still seems to be varying response and I'm confused by the follow up chemo that is now being recommended for some. Are they not completing the job before they re-infuse stem cells??

Is it real? Very much so. Does it work in the long run with currently used chemo protocols? I don't know...but like you I'm interested!

Sorry you are having a rough time of it. Managing our spirits in the midst of all the physical reminders of our growing limitations is a challenge (understatement).

Hope that helps!

(If I might offer some unsolicited advice...I've recently come to embrace the fact that our micronutrient levels have a huge impact on neurological well-being. I never really bought into that until I was in a position in which my levels were out of normal range. Then it was incredibly obvious. Jimmylegs is the resident nutrition expert here and could help you out with that if you were interested in doing something inexpensive and proactive whilst you research and consider hsct.)

hi and welcome, inshaallah sorry to hear you're having a bad time :S

i'm afraid i don't know anything about stem cell treatment, but as anon says, i have nutrition info to spare if you're interested. have any of your docs ever sent you for any nutrition testing or referred you to a dietitian?

anon - recall that our levels can be well within the flawed 'normal' range and so testing often misses issues that should be glaring

JL,
I didn't forget normal ranges are bogus. I just felt such an obvious massive impact of the nutrient depletion when they were out of range. Some of us need to be bashed on the head with an iron frying pan before we get a clue.

Back to stem cells...didn't mean to side track!

;)

hi, I can not at this time say much about stem cells. I do believe someday it will be ' and should be now an accepted treatment of choice. I can tell you that a friend of mine got treated for copd with his own stem cells "self paid" although not cured he is doing much better.

you might want to go to the ccsvi forum here a tims and read the ccsvi ccvbp by uprightdoc "dr. flannagan. ----------we are all different in our sameness trying to find our way. the best to you.

Oh, thank you all so much for the replies. You have no idea how mch it means. The last time I went on an MS forum, no one replied to any thread, so I did not return.

I will try and find the FB group now. Thank you for the recommendation. I had not thought of checking that. I too put in stem cell MS, and MS cure, into a google search every coupe of days - hoping.

I am a big believer in nutrients. The Dr scoffed when I posed the theory that my nutrition had a connection and just said 'no, just medicine will help', so I did not approach it again. I currently take rose hip oil, and in the morning, before i eat, a combination of pure honey, turmeric, cumin, and another thing they call el burbayze (spelling unknown) (deriven from the bee). But I did consider it could be a zinc deficiency, or similar.

Up until recently, it was bad, but i still had the use of my right foot, and enough strength that i could stand on my knees when holding onto something. Then bam, right foot won't move, cannot feel it, cannot stand on knees.. This means i now require more assistance, which i do not want. So these stem cell treatment possibilities have given me hope.

I normally have a level-head, but i feel like I'm drowning in this at the moment.

I think my iron levels may be very low, too. And my Vit D.

Jimmylegs, what micronutrients would you advise for a nursing mum, who has a very limited food intake? I do not eat a lot. Body reacting to immobility, i would think.

Thank you all once again. It really means a lot that you have all taken the time to reply and welcome me

Try contacting these people. They should know someone in your part of the world.

http://www.msstemcell.com/

Regards

hi again, it's late here but i'll send you info tomorrow for sure

ok i'm up! can you give me a little more detail re what you do eat? we should be able to do something to maximize the nutrient density coming from the food you do manage to eat each day.

as for supplemental nutrients, just for a foundation i'd suggest a high quality multivitamin - no one-a-day stuff. i've used some very expensive products before, but they can include a lot of non essential ingredients, and with one i tried, the recommended dose was 6 capsules per day! no thanks.
at 3 caps per day, this one is an example of a decent compromise: http://www.aor.ca/products-page/advance ... -basics-3/

multivitamins are for healthy folks - as a patient, you're likely to have specific additional nutrient problems consistent with those seen in other ms patients. where patients have low to mid normal levels, healthy controls have mid to high normal levels. once we have a closer look at practical steps where food is concerned, then we can start on a plan for additional supplements

possibly why some docs scoff at nutrition (virutally all of these studies were conducted within the last decade or so)

Status of nutrition education in medical schools.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430660/
On average, students received 23.9 contact hours of nutrition instruction during medical school (range: 2–70 h). Only 40 schools required the minimum 25 h recommended by the National Academy of Sciences. Most instructors (88%) expressed the need for additional nutrition instruction at their institutions.

Nutrition education in U.S. medical schools: latest update of a national survey.
http://www.ncbi.nlm.nih.gov/pubmed/20736683
The amount of nutrition education that medical students receive continues to be inadequate.

Nutritional advice in Canadian family practice.
http://ajcn.nutrition.org/content/77/4/1011S.full
During their undergraduate medical education, medical students in Canada’s 16 medical schools receive relatively little instruction about nutrition and how to provide dietary advice to patients.

Nutrition in primary care Current practices, attitudes, and barriers.
http://www.ncbi.nlm.nih.gov/pubmed/20228290
82.3% of family physicians reported their formal nutrition training in medical school to be inadequate, and only 30% of family physicians reported currently using any nutrition-related resources.

Barriers to providing nutrition counseling by physicians: a survey of primary care practitioners
http://www.ncbi.nlm.nih.gov/pubmed/8610076
...nearly three-quarters of respondents feel that dietary counseling is important and is the responsibility of the physician. Ranking of perceived barriers to delivery of dietary counseling were lack of time, patient noncompliance, inadequate teaching materials, lack of counseling, training, lack of knowledge, inadequate reimbursement, and low physician confidence.
This survey suggests that multiple barriers exist that prevent the primary care practitioner from providing dietary counseling. A multifaceted approach will be needed to change physician counseling behavior.

also, here are two short previous TiMS chats you might like to read:
http://www.thisisms.com/forum/general-d ... 19575.html
http://www.thisisms.com/forum/under-25- ... 21952.html

interesting lines of inquiry:

Nutraceuticals synergistically promote proliferation of human stem cells.
http://www.ncbi.nlm.nih.gov/pubmed/16522169
A viable alternative to stem cell transplantation is to design approaches that stimulate endogenous stem cells to promote healing and regenerative medicine. Many natural compounds have been shown to promote healing; however, the effects of these compounds on stem cells have not been investigated. We report here the effects of several natural compounds on the proliferation of human bone marrow and human CD34(+) and CD133(+) cells. A dose-related effect of blueberry, green tea, catechin, carnosine, and vitamin D(3) was observed on proliferation with human bone marrow as compared with human granulocyte-macrophage colony-stimulating factor (hGM-CSF). We further show that combinations of nutrients produce a synergistic effect to promote proliferation of human hematopoietic progenitors. This demonstrates that nutrients can act to promote healing via an interaction with stem cell populations.

Zinc deficiency regulates TGF-beta signaling, nuclear receptor activity, and neuronal differentiation in human neuronal precursor cells
http://www.fasebj.org/cgi/content/meeti ... acts/255.3
Consistent with previous work showing that zinc deficiency impairs neuronal stem cell proliferation, microarray analysis of hippocampal mRNA isolated from adult rats fed zinc adequate (ZA) or deficient (ZD) diets revealed the regulation of genes involved in cellular proliferation.

Zinc deficiency impairs neuronal precursor cell proliferation and induces apoptosis via p53-mediated mechanisms
http://www.sciencedirect.com/science/ar ... 9308020350
These data suggest that zinc plays a role in neurogenesis by regulating p53-dependent molecular mechanisms that control neuronal precursor cell proliferation and survival.

inshaallah:

If I were you, I would seek a second opinion. SPMS is relatively uncommon in 29 year olds, and you may have highly active relapsing remitting multiple sclerosis which is mimicking progressive MS. You may also have early SPMS with frequent superimposed relapses.

Some quick questions:

1) when is the last time you have had a relapse?
2) Is your clinical course truly a slow and insidious decline?
3) Have you had new T2 or gadolinium enhancing lesions on your most recent MRI scans?
4) Are you on disease modifying therapy, and if so, which one?
5) for how long have you had multiple sclerosis?

hematopoetic stem cell transplant works best in those with highly active relapsing multiple sclerosis and is much less likely to be effective in long standing progressive MS (which I doubt you have at age 29). Of note, the cytotoxic drugs mediate the therapeutic effect, not the "stem cells." The "stem cells" are only a rescue therapy to prevent severe anemia/immunosuppresion and to replace your immune system with theoretically less autoimmune pluripotent cells. The "stem cells" do not regrow myelin or neurons under current protocols. The drugs have significant side effects, and hence the treatment has significant risks.

If you go to clinical trials.gov, you can find multiple trials if you search "multiple sclerosis" and "stem cell":

http://www.clinicaltrials.gov/

Some of the more reputable people are Dr. Richard Burt and Dr. Sadiq

best of luck