can anyone advise on stem cells, looking after my sister who has psp, some members of the family have advised her (a clinic abroad also) on great results with stem cells, this is a shining light in her eyes, her last hope, she says, try anything, on investigating myself i have come up with negative results, and research is in the early stages, clinics are happy to ask for 18000 euroes for a 12 day course, i suspect they would treat her for parkinsons and nothing promised has any member any advise to give
stem cells: can anyone advise on stem cells... - PSP Association
Sorry to sound negative but I would treat with a healthy dose of scepticism if I were you. You are right that most trials have not been encouraging and research is in early stages.
I'm with Vicki on this.
Hi J travelled to Russia for stem cell treatment and handed over about 9K I think this was about 4-5 years ago and it did nothing for him. Hope this helps x
I have done some research into the promises that stem cells are supposed to be capable of. At the present stage there is only very limited success in lab tests to regenerate kidneys, heart muscle but nothing on large scale human trials. A few clinicians think stem cells are the key to help regenerate many parts of the body but with no evidence. I think there are a lot of charletons out there ready to raise your hopes, take your money and leave you flat. It may give hope but when it does not work what then. I would suggest do more homework on the company's background and any successes published in peer reviewed press.
Take care Tim
You are good to take such care for your sister, and I respect very much your willingness to consider the expensive and chancy option, but I agree with the others; there isn't the evidence to support this. If it were working, there would be an earth wide stampede. How long since your sister was diagnosed? Does she have a decent GP? I have found ours is worth any ten specialists, but I think we were very lucky to find him in this rather remote area of the US. Best wishes, love and peace, ec
You have to be careful to differentiate between what scientists say they can do and what the media says they can do!
Media misunderstands and misreports small laboratory advances as miracle cures.
Yes there have been advances but no magic bullet yet. Sorry to be so negative but I agree with the others.
Our Nuro at the world renown MontreaL General Hospital,McGill RESEARCH CTR ,TOLD US THAT MAYBE,,for the great,great grandchildren,my neighbour went to Panama and spent $60,000 and all he got out of it was a plane ride,do be careful,some people love money as much as you love your dear sister !
Hi, Rollie! Good warning there. There are some soul-less creatures out there, eager to prey on folks who are desperate for hope.
We spent some time at Montreal General when my guy's brother had treatment for brain cancer. Wouldn't it be funny if our paths had crossed?
How are you doing now? We had minus 25 degrees F (about -33C?) at the farm over the weekend, and I spent two days melting snow on the woodstove for water. (Fun, really.) Now it's raining. What a strange year it is already.
I hope you are well. Love, Easterncedar
Hi ,one wonders,We were there in Feb,2009 ,Dr Ron Postuma,and his nurse Lucie Lachance ,both great people .They remained in touch until Madeline passed away...something I know I will never really grasp! love,Rollie
I took my wife, Kim, to get her Stem Cells infused in May 2014 at Stemgenex which has a location near Miami, Florida. $15,000 US. By that time, Kim had PSP for about 4-5 years, so she may have been too far progressed. I told them about the pain she had in her foot and ankle due to a degenerative disc in her lower back (L4/L5). So they gave a small injection of her stem cells in her back, a bigger injection up the nose, and the rest went into an IV in her arm. They first injected Manatol, which thins the blood brain barrier.
It been almost 2 years and never saw any results for her PSP. But praise God, she has not complained about her foot and ankle since then. And it used to be an issue almost daily. So I'm a believer that stem cells can work, but in the right situation and maybe at the right time.
Was it worth $15,000? Well, I think so. It eliminated the foot pain. We spent a couple of days at a nice hotel near the beach. And I don't have to live with regrets that I didn't try something pricey that could have saved her life. I'd pay $15,000,000 to cure her. Anybody got some money to loan me? :-).
No ankle pain--that would be huge for me too because my husband has been struggling with that chronic pain in the right hamstring area. It is always on his mind, it is painful everyday! If that part could be removed I think it would be so helpful. Thanks for sharing your StemGenex experience with me.
Have they diagnosed where his pain is coming from? For Kim's, it was her L4/L5 disc. Even though she never complained of any back pain, she would have pain in her calf, ankle, and middle toes, but only on her right leg. She would have me constantly rub her "salve", which was prescribed by her orthopedic doctor called Voltaren Gel. It is a NSAID that you apply topically. It provided a little warmth to the area and usually kept her comfortable for a few hours. And the epidural injections helped some, but never lasted over 30 days. Although the last time she got them, the doctor screwed up and partially paralyzed her which lasted a couple months! And this occurred a couple weeks before we departed for a 2-week Panama Canal cruise. Ugh!
When we went to StemGenex, there were 5 others getting treatment that day. They kind a do it as a group with overviews of the process and everyone can share their issue. One had PD (a nice Indian couple), a young man had MS, an older man had COPD and was on O2, and I forget what the others had. Their fee included the hotel, which was nice and close to the beach, and also transportation to/from the airport and to the place where the procedure is done.
When we got there, we met the doctor and we told them about her back/leg issue as well. Rita, the CEO happened to be there too. She told us they would reserve some of her stem cells to address the back. I thought, what the heck. It wasn't the reason we were there for, but so glad they addressed that, because I can honestly say it worked! I'd love for her to have a repeat MRI of her lower back and have them contrast that to the original MRI.
How long do you think your husband has had PSP? What are his current symptoms? I think if we had been aware if this sooner in Kim's disease, we might have had a more fighting chance with it affecting PSP. We did this even though her neuro doc didn't endorse. But they didn't think it would hurt either. And if you have the money, I say hi for it. I have received some recent emails from StemGenex where they want folks to support them in fighting Congress, who is considering more regulation on stem cell therapy. So they may have to cease someday in the near future if the government decides to muck something else up. So time may be of the essence.
Just my personal opinions. Take it for what you think it's worth. If you're in the USA and you'd like to chat on the phone some time, just let me know and we can work something out.
many thanks ketchupman, for your helpful advice,with the information you have supplied me with, also the many other helpful people in our group,it looks like a convincing evidence stem cell treatment for psp is in its infancy and clinics are trading on peoples desperation, hope i can convince my sister who sees it as the only way, with out seeing reality,i would have been really in the dark with out the help of you wonderful people out there
Always glad to help. It's definitely in its infancy and there are plenty of skeptics out there. I did quite a bit of research before I made this investment in my wife. But if it worked, I would have given them everything I own. And if I didn't do it, I would have always wondered if I missed a chance of saving her life. As with any treatment, the further you are in the disease, the more difficult it is going to be to cure you, if not impossible, such as cancer. I really think for my wife, we were too late, as she was well into her 5th year, which is when things get pretty bad (incontinent, wheelchair bound, poor communications, major swallowing issues, rapid weight loss, beginning of dementia). If a patient was in the earlier stages, such as year 2-3, maybe they would have much better results.
My husband (Les) is 68 and we just found out about PSP November 2015 but the PD diagnose was in Spring 2012. The pain has been constant since 2012 and that is why we went in to the doctor in the first place. He was bucked off a horse and ever since then that pain has been in that one location (right back leg, hamstring area, at times runs down his leg). They have injected L4/L5 disc also and it gives him relief for a few days and then its back. We have gone through many tubes of Voltaren Gel. We have done acupuncture, massages, chiropractor, tens unit treatments, hot tubes, etc. If the StemGenex can help the pain then that will be a huge improvement for Les. He now takes Gabapentin for pain 3 x a day. It is on his mind all the time, he is just struggling with the pain. He also is very dizzy---is your wife dizzy from the pain?
Other current symptoms: no taste, no smell, vision doubled about 40% of the time, increase in falls (backwards)-2x last week alone, fatigue (lays in bed or on the couch about 16 hours out of 24 hours a day). It is moving fast! Trying to be positive for Les and motivate him to get out and do stuff. Yesterday we went to our nephews birthday party and he could only handle about 2 hours total. This morning we went out for breakfast and then the super market and it was probably about another 2 hour outing and that was plenty for him. Does this sound like the stage Kim is in with PSP?
Thank you so much for responding. Any leads or tips that can help my Les is appreciated. Please continue sharing. Where do you all live? We are in South Texas (on the Mexico-Texas border and by the beach (the Gulf of Mexico).
Regards to you and Kim.
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