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Jennifer, you seem so on top of everything. How did you approach the subject of stem cells with your neuro? I'm scared she'll tell us something we don't want to hear -- like treatment is probably 20 years away. Your neuro seems a lot more optimistic about stem cells soon.
 
Thanks but I am not on top of everything...might sound like it..but I am not. But I have always been of the opinion that, if you want something bad enough you have to help it happen and also there is only one person who will fight for what you want and that is you. I ask for help from anyone to do with this, and I have put my name forward to anyone who might help me, via trials of anything. I have put my name forward to several hospitals, who I know have plans for possible treatment and made sure my name is on a new UK database as a person willing to go on trials. I chose my mnd neuro as he is heavily into research and has monthly contact with other researchers from all over the world. I want my name known by anyone who might be able to help me.. This might be my last chance to fight for something (my life) so I am not about to stop fighting yet. I know I may not like the answers to some of my questions, but they have to be asked, however bad the answer may be. If you dont ask you dont get...AND I WANT TO GET THAT CURE. I brought my kids up with the phylosophy of avoiding as many What if's..in their lives, so I dont want them to say, WHAT IF I had tried harder to get treatment. I do have really bad DOWN days as well.
I know the reality of this damn disease as well as anyone, but cant let it win without a huge battle.
 
Jennifer

I admire you Jennifer. All of you here!

I will fight for all I can too.
 
Stem Cell

I am not sure if I have emailed in the past privatley or not. I am london based, and I have put my name forward to the one neuro in the uk that I know is doing research into stem cell treatment. There are probably more diong research that I have not found yet. From all I have read from worldwide sources and from talking to my exellent neuro in an mnd clinic, it is not a viable treatment YET...I dont think it will be long in coming though .PLEASE HURRY. I for one am willing to give it a try, WHEN a reputable source does it. Not a website charging thousands to go to an obscure place.

Even though my mother does not suffer from ALS, she has congestive heart failure, and diabetes. She is 72 years old. After being hospitalized with viral pnenomia last month and being on a ventillator and feeding tube, her prognosis did not look good. However, the other day, she sent an article to me. It was very interesting. It was an article about a woman who lives not far from her home in Southern, CA. The woman in the article suffered from Multiple Sclerosis. After having an adult stem cell treatment in Costa Rica, she was given a new lease on life. Before treatment, she suffered from fatigue, blurred vision, control problems. That was life with MS. The disease became so chronic and unbearable that she could no longer work. She was only 36 years old. She had already tried many things: acupuncture, yoga and diet. Then she stumbled upon an adult stem cell procedure only available overseas. She talked to other MS patients who said they had great success after being treated at The Institute for Cellular Medicine in San Jose, Costa Rica. Not wanting to wait for FDA approval in the U.S., she made a life-changing trip to Costa Rica. For 80 days, she received 8 injections of adult stem cells extracted from donated unbilical cords and two intravenous injections of stem cells taken from her own fatty tissue. She also did physical therapy 4 times a week. By the end of her stay, her balance and strength dramatically improved, her bladder issues were gone and sensation had begun to return in her hands and feet. She said the institute was immaculate and equipped with the latest medical technology that would rival any large U.S. health care facility. After the treatment, she said improvement of her health was astonishing. The treatment was not cheap but it was worth every dime.

Now, my mother wants me to research the Costa Rican institute. She wants stem cell therapy for her diabetes. I am eager to find out if this medical facility can do anything to help her. Before my mother became so ill, I made statements such as the ones seen on the ALS website: for example, no treatments in third world countries, etc., etc. However, at this point, stem cell therapy is a long way off in the U.S. Too much red tape and too much politics! People need treatment and people are looking for cures. If the treatment can be safely rendered in a country such as Costa Rica, I would give my eye tooth to get treatment for my mother. I am an educated woman. I have a BSc. in Speech Pathology and Audiology, and a Clear, valid teaching credential in Special Education Rehabilitation and School Psychology. Perhaps we are grasping at straws but I'm going to reach as high as I can to grab one of those straws if it means a cure or a better quality of life for my mother.
 
Oops, I left out one word about the woman in the article's symptoms...she also suffered from bladder control problems, not "control" problems as was stated in my post. This was merely a typo. Thank you.
 
I have known several people with MS that experienced almost a complete recovery after being bed ridden. This all happened without reason and without any drugs or treatment.

Forgive me but because these people experienced improvement does not mean stem cells were the reason.
It may or may not help her diabetes, but we know it does not help ALS and this is a forum for ALS patients, caregivers, family and friends so stating that stem cells might help MS or people with diabetes is a bit out of place.

Proceed with caution as the only outcome may be a drained bank account.
 
Stem cell experience

Thanks to everyone who has given their experiences - I really appreciate the honesty. My own mum is in hospital again with a lung infection, possibly pneumonia. I think stem cell is one of the best hopes, and I find it appalling that red tape is affecting people's chances. The only way to keep the hope alive is to share experiences.
 
We have a friend around the corner from us who has just booked stem cell treatment in germany. Having it in mid May, he is almost at 4 years with limb onset. Will watch with interest and keep the forum updated. Mandles PM me if you like, to keep you updated, since we are both in london. One thing that I wonder, is, if you have stem cell which is not recognised in the uk, will they stop your nhs treatment?
 
I met with a young woman who is receiving outpatient PT after a recent stem cell procedure in Mexico. She is a paraplegic after an injury. It was the first injection of 4 which were 6 months a part. The initial treatment was $23,000 and the other 3 were $14,000 each. She described the procedure like a lumbar puncture and it lasted about 20 minutes. She did not have much pain but she has no sensation below her injury. The positive I noted about the facility is that she said the facility was run by an US physician and much of the staff was from the US noting that they could research and practice across the border without the limitations of the FDA. The negative I noted in my discussion with her is that there were 5 people there that day and not one of them had the same diagnosis. Makes me wonder about the goals of individual treatment and research and the results.

I will be inquiring with interested in her progress over the next 2 years.
 
Makes me wonder about the goals of individual treatment and research and the results.

The goal of the treatment is to extract $65,000 from the patient.

-Tom
 
I am in touch with XCell and if they accept me, I think I will go for the Stem Cell Treatment. My bulbar symptoms are moving slowly and I want to move fast! I don't think that Stem Cell Treatments will be available in the US for 6 or 7 years. I won't bother to ask my neurologist because he will say it won't help. My orthopedic surgeon today said "go for it" and I think I will. It may not help but I have had many medical opinions saying that it won't hurt. The XCell Treatment Center in Cologne, Germany is rated in the top ten in the world. Keep the faith!
 
Hi Asantiago,
I am thinking of going to XCell for treatment. I have bulbar onset and drop foot--both moving slowing. I know the treatment might not help but I am willing to take that chance. Did your mother have any side effects or did it make her worse? I was told that it wouldn't hurt. Thanks.
 
Hi LeeLee, I have posted before on this subject. I have a friend who is going to xcell next month, and will update on his progress. My mnd neuro, who is very open minded and well into new treatments, knows one of the doctors there, he said, in his opinion it is a very careing and well run clinic, but he does wonder how they actually collate their results. It is undoubtedly a very worthwhile treatment for some illnesses, but he has advised me not to go for it at the moment. He says that it not just a case of them injecting stem cells into you, there is a lot more to take into account..I will be there in a flash, we can drive there, once there is more evidence of it working for als. Keep us posted if you decide to go and wish you luck with it.
 
Jennifer -- your neuro is very open minded and open to new treatments... have you asked him/her opinion on Iplex? I'm scared to ask mum's since the reply is always negative. i know this would be no different.
 
Hi LeeLee,
I just saw your reply to me. The only adverse reaction mom had was some pain in her legs it only lasted a couple days. We don't believe the treatment had any positive affect for her.

We really didn't think it would do anything either based on the low success rate for ALS. They desperately need to update their stats on the website! While I have little faith in the procedure for ALS, I wouldn't discourage you from going either because you just never know and life is to short to not try it.

They will take you, they take anyone with an ALS diagnosis at least they did in 2008. I took lots of pictures while we were there. If you want help with arrangments or info on the area feel free to PM me.

May God Bless you!
 
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