I am considering stem cell treatment in the United States to possibly help my ataxia. The treatment is using my own adipose (fat) tissue to get mesenchymal cells that are re-introduced back into the body thru IV, and then nasally (due to the blood/brain barrier). Has anyone had stem cell treatment and if so, what was the outcome? Any advice/suggestions/opinions would be greatly welcome, positive or negative, regarding stem cell treatment...,thank you!
As far as i could learn from reading, this treatment is actually still costly and not 100 % optimally developped.Some people are happy about the results, you can find testimonies on YouTube. Hopefully within a few years also the insurances will pay for that. In my person i have had a stem cell transplantation for hematopoietic stem cells for leukemia. In the comparison to my treatment it is much more likely to find the fitting mesenchymal cell for your personall need. I got my stem cells by two IV infusions. The stem cells where transported first by airplane from America to Austria and conserved somehow, don`t know exactly.(added something and/or freezed) The reseach in this regards processes, as the researcher have been successfully won human mesenychmal stem cells from the cells of a person affected by SCA7. Hopefully this research will contribute to a faster devellopement of the stem cell cures for SCA7 and also for the other ataxias! Mouse models (poor mice..) are existing already founding out that the implemented mesenchymal stem cells overclimbed the blood/brain-barrier. When you write that you would get the stem cells partly by the nose, i can imagine that this would be especially helpful, surely the doctors on the transplantation unit are fully informed and involved in the ongong studies.. Have you already planned something concrete?
Thanks for your response Akita! This is such an important and serious decision for me to make, any feedback is greatly appreciated! No, I haven't made any concrete plans, as I'm mulling many aspects of it over, weighing pros and cons. Yes, it's definitely early days for stem cell treatment, so I'm just in the "research" phase. I have to admit though, it definitely intrigues me!
You are right, it s early days for stem cell treatment. You have got the choice where to invest your money:Go to an other cure, etc. you will have considered all this. If icould afford stem cell treatment, i would do it immediately (after my diagnosis for which i wait actually), because there have been positive feedbacks, and - as far as i know, no damnage caused? In the mousemodel it is scientifically proved that the mesenchymal stem cell are wandering into the brain an add to the reconstruction of the defective architecture.. i think this has already been discussed here in the forum?
in times where stem cell transplantations for leukemia where in the pioneering phase, there were some people who survived this- and the cancer for many years, and others who did not want to risk that, died relatively early..(i know such a "case" from another forum. Here in the question of the mesenchymal stem cells, this would not be so dangerous to risk it.
But i am also waiting for somebody from the forum with negative experiences or contras (except the money-question)
One important question for me in this regard would also be, when would be the best time to start with stem cell therapy? Is it on the beginning of the disease or even later?
And: What is my timetable? How much time do i feel having to act against the procession of the disease? Are there alternatives?
I'm jealous! I heard it works. Let me know .
As I said before Lori, I'm still in the ''considering it" stage. Yes, Akita, I think treatment is possibly(?) more effective in the "early" stage of the disease process. Of course, don't know for sure, but it seems logical! I personally don't know of any alternative treatments for ataxia, unless one has the type that responds to a gluten-free diet or vitamin therapy.
Just now i read in your profile that you have got sporadic ataxia,with diagnosis from 2005. As there have been advances in diagnosing in the last years, probably you can get an additional diagnostic testing? Ever tried to check all the possibilities for Ataxias you could have got? In the moment, this is my problem also. Supposedly SCA6, but whith special features, and probably also toxic from my chemotherapies and many medications including immunosuppressants; etc. I would like to have an overview, a diagnosing system for Ataxias, - this would make things easier. Not so much support actually from the doctors...
Kind regards, Akita
My neurologist says there's no treatment for sporadic cerebellar ataxia (non-genetic/unknown cause). I did have genetic testing for the known recessive ataxia's, which was negative. Wish there was something else, I'm not alone in that wish...,ha! Sounds as though you may have ataxia due to chemo an immuno meds. I have no idea as to why I have ataxia as I led a fairly "clean" life, and was very healthy and active. Of course, there are many diseases that people get that have no rhyme or reason as to why, right? Life's a mystery... ;o)
Rose if you have the chance to do it. I would try ANYTHING if it might help me. With your Ataxia being so much a mystery of why only you have it. To me it would be worth the try. But that's me. You have to do what you feel comfortable with.
Thanks for your words of encouragement Lori! I'm mulling it over, as it's a HUGE decision to make... ;o)
Agree with Lori and others - I would certainly give anything a go.
Hi Rose, At the Convention in Texas for the NAF( National Ataxia foundation) They said that stem cells are a great idea and whats promising are skin cells. They are the next best thing that’s come up in the market but it’s still 10 years away. They give us hope but say its just not there yet.
To help make your decision check out there site so you can read their updates about it. For me it’s a trusted site!
They have researchers and Dr’s exsploring it on a regular basis.
I appreciate all the comments/advice thus far...,thank you so much! ;o)
Yes, i am considering at least other two contributors to my ataxia: Sjögren Syndrome and Cyclosporin/Prograf.
My neurologist and an ataxia doctor through NAF said NOT to have stem cell treatment unless it's through a reputable clinical trial. It's very early days for stem cell treatment for ataxia! Research takes time. Hopefully someday it will be the treatment of choice for ataxia. Thanks Jeannie for the NAF info. as I emailed them!
Thanks Rose. My doctor said the same.Its so frustrating.
i don'tknow about anybody else, but I haven't got ten years to wait. I''ll give most things a go within reason.
You do know. If they ever do find a cure for Ataxia. It will be trail. And insurance wont pay for it. Then only the rich can get it. Stem cell probably can fix us. But that's to controversy. I don't think Ataxia is on the list for cures. When you think about it. It's a very small part of the brain that messes us up. Well mine anyways. And its at the bottom of the brain. I just dont know. Like I said it is frustrating!
While understanding the reasons to talk against the off label use of a medicament, i don`t understand why not doing a stem cell therapy when you do in in the frame of a reputed medical institute which will consider all pros and contras for you and also read your patient records from the past. All institutes working on this field in America should also possess the patient files of other patients who had treatment with them in the past, and connections to other medicians working in this field. I cannot imagine that an institute for stem cell therapy working in the US. would be allowed to do so if the safeguards demanded by law would not have met by this institute.
Doing stem cell therapies in studies would be very advanteous, because this creates,one day, enough evidence that the insurances pay for it, that there would be a FDA permission for these therapies, so that many patients could be helped by such a therapy with prooved standard.
In case you do such a therapy today you don`t know the percentage of patients whose state of health was improved by this, and the percentage of side effects. Within a study you will know this - at least after,when the results are there..
As to read on pubmed/Internet infos. there are already existing many experiences for the treatment of the heart by stem cell therapies, with - so said - randomized studies with 200 participants..These were with the own stem cells of the patients. For leukemia there are existing also two variants: The autologous stem cell transplantation (with ones one stem cells) and the allogenous (with foreign stem cells), each variant with its special advantages and disadvantages.
Maybe it s also a matter of costs that there are not such studies for Ataxia up to day. But i think it could furthermore be of the reason that the process is not well understood enough, that medicine hesitates to expand this form of cure to a bigger circle of patients, - which will supposedly not die tomorrow and also would not cost much money for the system - in contrary to heart patients.. For reading (i have not got the fulltext)
Cell therapy for the treatment of coronary heart disease: a critical appraisal.
I am for Stem cell 100% It can and will do a lot!