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dberbicegirl · 06-14-2012, 04:58 PM

Hi Everyone:

Has anyone with ALS/MND ever considered stem cell therapy? My brother was diagnosed with ALS in January 2012. I suspect that he was experiencing some symptoms way before he consulted with a neurologist. He started with his speech slurring around July 2011. Due to the fact that he resides in the Islands and no specialists around, he waited until he could have travelled to the USA.
Five years ago he said he started with a pain in his left shoulder and consulted with a joint specialist, who extracted fluid from his shoulders. Since then he has had only periodic bouts of pain, until his speech was affected. Am I to assume that he may have had this for a while?
It is difinitive now - he did have all the necessary tests and was diagnosed at GW - the ALS clinic there. I saw him 2 months ago and his arms and shoulders have atrophied - he eats oK, has a lot of saliva accumulating in his mouth and slowly losing the use of his right hand. He complains of severe weakness in both arms
I am not sure how to go about telling the family that time is of the essence. I have received quite a bit of information on Stem cell therapy and just needed some imput and guidance.

Thanks and I am hopeful.

Desi

jamiem · 06-14-2012, 05:13 PM

I share your desire to know the value of stem cell therapy. I was diagnosed with ALS in February 2012 and immediately asked my neurologist about it. He was not encouraging, but I don't want to give up. I will be following your post. Jamie

SueG · 06-14-2012, 05:42 PM

Oh, how I miss Allen (trfogey) at times like this!
Any claims of successful and safe stem cell therapy available to ALS patients are scams. Emory has a Phase I trial going, which other forum members are better informed on, and there's a lot of hope, but not there yet.
Save your money and check out the Northeast ALS Consortium for good info on clinical trials.
Sorry you have to be here, but you'll find a wealth of information.
Good luck,
Sue

Jane · 06-14-2012, 07:37 PM

Please save you money. I have not heard of one person who has had lasting results from this treatment. A few have gotten an extremely short time of improvement. All say they wish they had kept their money for other things. Trials here in North America give a great deal of hope. The ones in other countries are just scams

brooksea · 06-14-2012, 07:40 PM

Please do not spend your money on scam artists that will suck you dry. There was a 60 minutes show dedicated to pALS getting ripped off by "stem cell specialists." After having dealt with ALS for almost 6 years, I've read just about everything in order to save my husband. I can tell you that those that underwent "3rd world" treatments did not survive in the end, nor did it seem to prolong life.

Here is a link that may be helpful regarding stem cell trial:

brooksea · 06-14-2012, 07:41 PM

It went to mod eration so I will try again:

http://www.neuralstem.com/cell-therapy-for-als

sadiemae · 06-14-2012, 08:18 PM

No NO and NO as far as stem cell ther apy outside the US. They are scams, and do not work. The only folks eligible for the Emory trials must live very close to Atlanta.

ghost_writer · 06-14-2012, 09:06 PM

@sadiemae, I understand your concern about scams, however the above link is information about ongoing trials.

Trials I just verified as posted on National Institutes of Health site.

I agree that we are not there yet. There are trials being conducted all over the world, thankfully. I just read about cord stem cell trial in China. No accepted treatment to report.

Keeping the hope, Roger

Toto's Dorothy · 06-14-2012, 09:25 PM

Desi,

As I stated in my message to you earlier today, please check the research section. And as my understanding, Emory is not taking new patients on yet. They are starting in the second round of injections for those that qualified. Hopefully, the one person that is part of this study, will come across this thread and give you the much needed information you are seeking.

Let your fingers do the walking through all the threads. And any questions big or small ASK. Someone has probably already gone through it. Also, talk to the MD A L S A and the M D A. Also, the CDC is collecting data, please have your brother register there.
And have him sign up for S S D I benefits now. There is so much to do in the beginning, but it will slow down.

By the way, welcome to the family nobody wants to be a part of. When your brother is ready, please share us with him. And remember, we are all living with A L S.

Sending a warm embrace,

notgivnup · 06-14-2012, 09:52 PM

Desi, I am so sorry your brother has gotten this diagnosis. Welcome to the forum family where I hope you will find answers to your questions. On the stem cell I have no knowledge but living with this there may be other questions I can help with. {Hug}

HelenL · 06-14-2012, 09:53 PM

Talk to Ted, he was in the emory trial, and may be going back.

The only other stem cell trial I've heard of that is "legit" is in Israel I believe... do NOT go to some random place thinking that some quack has a cure for you. He'll only cure you of your money.

There is also some thought that it's not the stem cells that may be working, but the drugs the patients take to prevent rejecting it that may be working.

Welcome to our forum, btw!

dberbicegirl · 06-14-2012, 10:44 PM

Thank you for your response. Everyone is hurting right now . It is funny how ignorant one can be about certain subjects until it stares you dead in the face. A murual friend died about two years ago of ALS. I understood how quickly she deteriorated but never took the time to inquire or educate myself about the disease . I am now hungry for knowledge about it. I pray everyday for divine intervention for each and every one of you.

Desi

dberbicegirl · 06-14-2012, 10:50 PM

Thank you very much for the response. The more I read about this disease, the more pain I feel . They can send a man to the moon, but cannot find a cure for something so debilitating. Is the bulbar form of ALS the worst kind to be afflicted with?

Desi

panguinjen · 06-15-2012, 09:11 AM

Hi Desi,
Welcome! I don't know if bulbar is the worst form. But it's what we live with. Have your brother bank his voice while he can still speak. There are medicines that may help with saliva. Talk to him about a gastric tube while he is still able to eat by mouth. Ask, ask, ask!

Jen

chrisroski · 06-15-2012, 09:19 AM

I totally agree. I find it amazing that they can transplant limbs, people have there faces fixed after devastating events, put people in remission for cancer and so many other things, but all these years, since Lou Gehrig was diagnosed they can't figure this thing out. It is just overwhelming to me.