ALS Research

[isic]

There is much research being done. Alot of these studies, however, aim to increase PALS lives' by a few months. This is a dubious benefit to PALS. I question whether these studies are designed to benefit PALS or are for the benefit (personal professinal achievement/advancement) of the researchers.

[lisag]

Hi nice to meet you Isic,
And you pretty much summed it up for me...
I think that is exactly what is going on..
I too think there are resources that are not being tapped into ...by the majority of the medical community to extend PALS life today..ALS remains an enigma..but we can still treat and prevent secondary complications.after all most often they are the deadly part of the disease...
Unfortunately, I think alot of PALS are wriiten off by their physicians, and are just followed by neuros and occasionally pulmonologists, but ALS presents itself with many complications besides nuerological ones...physicians at this point should have the attitude of ..."I may not be able to treat the disease itself ..but many of the secondary complications are very treatable some even preventable.."
Everyone wants a magic bullet..I'd like to see one too..I don't know how far away it will come or if it will come...but I do believe research "will" eventually progrees..it is a matter of time that is the question?
Rehashing meds that failed in different combinations of clinical trials..when they never expected them to be that good anyway ...in my opinion is a waste of time and more importantly money,,..
To me alot of focus should be put on keeping PALS alive with the resources we have now ..until more effective things can be found..then thats when you put the money into the expensive trials..Lisa

[Nick]

To me alot of focus should be put on keeping PALS alive with the resources we have now ..until more effective things can be found..then thats when you put the money into the expensive trials..Lisa

Hi Lisa. You are absolutely right. I mean your phrase " ..until more effective things can be found". But what patients have to do? Wait for wounder? I know many patients who fights for their lives with little positive response. Little, but positive, may be temporary, but positive. I examined patients before and after stem cells therapy and I sure about positive effect of such therapy. It is expensive but it works and gives hope.

[lisag]

Hi Nick,
I do know PALS who tried stem cell therapies...and had no success at all as well..
Many here went to Atlanta , Georgia for HUCB ...had their docs take before and after parameters..many felt if helped short term.. including my husband and yes some of his docs...many others who tried HUCB felt it helped them none,...but at $25, 000... bottom line it was impractical...to continue..plus the FDA shut everything down due to the fact the doc did not have an IND... ..
Anyway..my point is..right now the magic bullet just isn't there...
But PALS can live longer if there docs treat and try to prevent secondary complications...
One day I have no doubt an efective treatment will come..the question is just when will that be....but most of the research I see going on right now is just rehashing a deadend for now..
Spend the money on something better than researching worthless drugs like Creatine, Minocylcine , Celebrex..well you get the jest..I could go on with the list all day...Lisa


PS..I miss my buddy Wayne here as well...Wayne, Harry, I and others here would go some rounds debating on "efficacy of treatments"..Wayne and Harry taught me this though..and it is food for thought...the Placebo effect can give "real" physical improvements short term..so truly it is hard to define what really helps and what doesn't..you can't look at one person ...you have to look at a whole group..to top it off ALS isn't neccessarily linear..it can burn itself out for awhile short term and start up raging again... although it is human nature to think I tried this and my symptoms slowed or halted for awhile..or maybe I even had minor "documentable" improvements,,, so whatever I tried must help ..we like to see things through cause in effect relationships...but it truly could be coincidence...Lisa

[Nick]

Hi Nick,
I don't know manyPALS who tried stem cell therapies...and had no success at all as well..


Dear Lisa,
First of all let me express my regrets concerning your husband problem.
I have experience in ALS treatment. ALS, pseudobulbar form was diagnosed in 1999 in 50 y.o. women. She was under stem cells therapy for 1.6 year. Exactly after procedure of paravertebral, subcutaneous and IM injections of stem cells she felt emotional improvement, decreasing of salivation and extension of movements volume. She used wheelchair prior the procedure and can walk at the day of procedure (not far of cause). But it was temporary effect lasted for 1 month, gradually decreasing with time. She died in 1.6 years. We worked with embrionic poorly determinated cells (neurons derivates, muscles derivates for muscles volume support). I know that such therapies are not allowed in the USA by FDA, but it is allowed in other countries such as Ukraine, Russia, South Korea, China. If you need more detailed info about this treatment contact me by e - mail.
Sincerely, Nick

[lisag]

Hi Nick,
I knew others who tried stem cells in Germany, the Bahamas-"embryonic" there with no success..
Many who tried them in the UKraine..
People who had stem cell transplants in China..
Unfortunately none of these treatments panned out...
I 've been around the world of ALS for many many years ...7 going on 8..I've talked to top researchers ,,,ran into my share of snake oil salesmen as well.
Good solid research will come one day..I truly believe that..but some changes need to be made to the current system..
I'm no exception here..talk to many of the PALS/CALS who have been around for years...Lisa

[Nick]

Hi Nick,
I knew others who tried stem cells in Germany, the Bahamas-"embryonic" there with no success..
Many who tried them in the UKraine..

Dear Lisa,
As I wrote before there are some differences between mesenchymal stem cells and embryonic stem cells. As far as I know in the Ukraine you can meet mesenchymal stem cells therapy approach. It is not so effective in compaire to embryonic. But, of cause, I agree with you that at the moment we can't give right answer- how it works. This week I will start new course of therapy for my patient with advanced method of stem cells innocculation. If you want I can inform you about changes in his status.
Sincerely,
Nick

[lisag]

Nick,,
Hi.. the countries that I named that did embryonic stem cell transplants were Germany and the Bahamas..again with no succcess...the UKraine I'm not sure what type are used ...but it was tried a few years ago by many PALS,,,in China- embryonic fetal olfactory cells were used...again alll failed...
I am all for ESC research..took part in a petition for it... but ESC for ALS is in its infancy still..and can not be practically used yet. ( though it has been tried and failed overseas)
.I too have my doubts that it will prove to be an effect treatment on its own...until something else can be found to slow ALS down..Lisa

[isic]

Txs, even if they fail, are worthwhile if they have some sort of possibility of a "curing" effect. But many studies are done for the notoriaty of the researchers. Such studies waste precious funds. Let the researchers spend their days in bed watching reruns on TV and having their nose and bottoms cleaned and then they won't design such studies which tell PALS there is no hope.

[lisag]

Txs, even if they fail, are worthwhile if they have some sort of possibility of a "curing" effect. But many studies are done for the notoriaty of the researchers. Such studies waste precious funds. Let the researchers spend their days in bed watching reruns on TV and having their nose and bottoms cleaned and then they won't design such studies which tell PALS there is no hope.

Let us agree to disagree on that point...I am as dismayed as anyone at the state of present research..but I must say...stem cells have already been tried experimentally by many PALS ...it is not worth the thousands out of their own pockets for others to follow suit...at best their effects were temporary in some..at worst they were non-existent...going broke and still dying of ALS would not be worth it for this generation of PALS...
Again I feel more progress needs to be made in research as stem cells are just not ready to be used in ALS yet...I again have my doubts if they alone will cure it..
As far as the word cure..I've learned to be darn suspicious of "anyone " who uses that word..before there is a cure an effective treatment must be found...
Lisa

[lisag]

Everyone intrested in stem cells should read this link...

http://www.quackwatch.org/06ResearchProjects/stemcell.html