My CtrlAltDel - Status

Discuss stem cells, adult and embryonic, and their therapeutic potential for MS here.

Re: My CtrlAltDel - Status

Postby LR1234 » Thu Mar 14, 2013 2:26 am

Asher I am also following your journey please post when u can. I hope u r ok.
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Re: My CtrlAltDel - Status

Postby packo » Thu Mar 14, 2013 10:55 am

Good luck, Asher!!
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Re: My CtrlAltDel - Status

Postby Asher » Fri Mar 15, 2013 2:19 am

I'll report this weekend
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Re: My CtrlAltDel - Status

Postby Chilax » Sat Mar 16, 2013 1:12 pm

Hi Asher,

Good to hear from you. I look forward to your update.

Best regards,

Al
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Re: My CtrlAltDel - Status

Postby Asher » Sun Mar 17, 2013 2:10 pm

As promised, here is my nearly 1 month update of my MSC's infusion:

On the bright side
- Issue focussing my sight on an object is resolved. It seems like sight in my right eye that deteriorated due to optic neuritis has improved.
- Better energy, improved stamina (staying power) of I estimate 20-30%

On the, so far, disappointing side
Motor function, i.e. walking and specifically macular degeneration in my right leg and arm, and near paralysis of my right foot, have not improved. Recall this degenerative process persisted even after my HSCT in Heidelberg Germany. I remain patient, exercise, but am starting to doubt this aspect of my disease will ever significantly improve. It may be early to judge, but I have this distinct hunch that I have exhausted my options on this one.

My conclusion again is: Do this stuff as early as possible in the disease and do not wait for damage and disability to accumulate. If only someone had told me this 5 years ago...

Asher
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Re: My CtrlAltDel - Status

Postby LR1234 » Sun Mar 17, 2013 4:33 pm

Hi asher
Thanks for the update.
Sorry to hear there is not much motor improvement. I hope this changes x

I have the chance to do msc infusion 2 million cells per kg of weight or something like that (u would probably know better) it involves a bma and then 2 month wait to grow them. I am being offered one infusion at this time and have to be off dmds for a year.
I am edss 3, diagnosed a few years ago.
Its always hard to know whether to go to the next level of treatment I have been relapsing on copaxone.
Would u take this opportunity? How was ur bma?
Thanks for keeping us updated so honestly
L x
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Re: My CtrlAltDel - Status

Postby Asher » Mon Mar 18, 2013 3:57 am

L x, this is what I wrote on Feb. the 1st:

This what I wrote someone, only reflecting my humble opinion formed by what I read, experienced and heared from professionals: "SPMS is a turning point where MS turns into a different disease. Chances HSCT will make a difference in a disease with no inflammation are slim. Specifically, HSCT has proven most effective in stopping and to an extent reversing MS for people with active and aggressive MS. If you have active MS and I were you, I would waste no time and do HSCT while bearing in mind there are no guarantees, always hoping for the best and preparing for the worst.

HSCT is thus a means to halt an active disease. Potential reversal of symptoms is a secondary benefit as your nerves are no longer under constant barrage allowing for autonomous recovery. If you want to engage in damage repair Msc's is the best game in town, again no guarantees.

So, the right sequence for you would be first HSCT, followed by Msc's. I any event, always seek treatment from reputable experts. You wouldn't buy a car from a non certified dealer would you? Lo and behold when it comes to treating your MS. Prof. Slavin in Tel Aviv is one of the, if not the best in his field.
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Re: My CtrlAltDel - Status

Postby LR1234 » Mon Mar 18, 2013 3:11 pm

Thanks asher x
I think hsct is too risky and heavy for me at this time (and unavailable) but I am wondering if msc's will do anything?
I might consider hsct next though
Last edited by LR1234 on Mon Mar 25, 2013 8:20 am, edited 1 time in total.
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Re: My CtrlAltDel - Status

Postby Asher » Tue Mar 19, 2013 12:46 am

Msc's before HSCT is putting the cart before the horse. HSCT is nothing more than chemo, safely administered to millions around the world. I can't see how MAC's can stop or alter the course of an active disease. But it's your money and your ms, wish you good luck.
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Re: My CtrlAltDel - Status

Postby LR1234 » Mon Mar 25, 2013 8:19 am

Asher sent u pm
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Re: My CtrlAltDel - Status

Postby Asher » Tue May 07, 2013 11:57 am

Three months to the Msc's and nearly 2 years to the HSCT treatment. Would the disease have progressed faster if I had not taken the treatments? Your guess is as good as mine. Apart for very short lived improvements the disease has not stopped and certainly was not "cured".

Here are my take outs. They represent my opinion only and should not be taken as advice:

- No one can predict whether a specific MS therapy will or how well it will work for you.
- Whilst an immune response has been proven beyond doubt to play a role in MS, there is growing evidence that it can not explain the whole picture. Moreover, a growing number of scientists believe that the immune response is indeed exactly that; a 'response' to something else that is going on. This may help explain why HSCT does not work for everyone. MS remains an enigma.
- Using stem cells to repair damage is a promising prospect but bear in mind that this science is still in its infancy and that the efficacy of this treatments is limited at this stage. How soon better stem cell therapies will be available is hard to tell; they may be just round the corner and they might as well require a few more year of patience.

Asher
Last edited by Asher on Sun Jul 07, 2013 1:30 pm, edited 1 time in total.
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Re: My CtrlAltDel - Status

Postby UWE59 » Sat Jun 08, 2013 6:08 am

Asher wrote:So here is the promised status report, but first the facts:

• In day +5 my white cell count dropped to 0.0035, indicating my immune system was practically eradicated
• Day +6 was 0.03
• Day +7 was 4.5
• Day +8 was 35
• And today, day +9 was 130

Professor Dr. Ho, the amazing gentleman who runs the stem cell transplantation ward of the Heidelberg university hospital told me this morning that he expects the count will exceed 1000 in the next 48 hours. Thereafter my new immune system will rapidly recover to normal levels (varies by individual, anywhere between 4000 and 10,000).
Now when you ask an MS patient who is undergoing HSTC to describe how they are doing, one must realize that there are 4 distinct phases.


Hi Asher,
I´m interestet in treatment by Prof. Dr. Ho in Heidelberg. This is my hometown !
Please give me an actual contact adress of Dr. Ho for a first contact.

Regards
Uwe
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Re: My CtrlAltDel - Status

Postby Gogo » Tue Jun 11, 2013 4:37 am

Asher wrote:- Whilst an immune response has been proven beyond doubt to play a role in MS, there is growing evidence that it can not explain the whole picture. Moreover, a growing number of scientists believe that the immune response is indeed exactly that; an 'immune response' to something else that is going on. This may help explain why HSCT does not work for everyone. MS remains an enigma.
Asher


This is not only growing, but I would say, it is well known. At CTCI, they DO NOT recommend HSCT if you do not have active lesions and if there is no significant differences in MRIs. You are fully right that MS is an enigma and it is really good that you drew attentions to these things that patients usually forget.

What is interesting that someone might have no active lesions when he has the progressive form of the disease and his MRIs show no differences in let's say ten, fifteen years, but his condition is still deteriorating. This is quite typical. Also think about it, DMDs that modify the immune responses DO NOT help in most progressive cases and they do not halt progression at all.

That is for sure that there is an autoimmunity component of the disease as you said, but it seems that autoimmunity can not explain the whole picture, mainly the progression phase. I think that should have been already clear when DMDs could not halt progression.
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Re: My CtrlAltDel - Status

Postby Asher » Tue Jun 11, 2013 9:39 am

This is not only growing, but I would say, it is well known. At CTCI, they DO NOT recommend HSCT if you do not have active lesions and if there is no significant differences in MRIs. You are fully right that MS is an enigma and it is really good that you drew attentions to these things that patients usually forget.

What is interesting that someone might have no active lesions when he has the progressive form of the disease and his MRIs show no differences in let's say ten, fifteen years, but his condition is still deteriorating. This is quite typical. Also think about it, DMDs that modify the immune responses DO NOT help in most progressive cases and they do not halt progression at all.

That is for sure that there is an autoimmunity component of the disease as you said, but it seems that autoimmunity can not explain the whole picture, mainly the progression phase. I think that should have been already clear when DMDs could not halt progression.


I'm not a scientist but my common sense tells me there is a difference between inflammation (RR) and degeneration SP & PP although loss of gray mass e indicates there is also a degenerative component early on in the disease). What causes both no one really knows... The immune theory alone can not explain the whole picture.
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Re: My CtrlAltDel - Status

Postby miri » Mon Jul 08, 2013 12:39 pm

Asher wrote:
I'm not a scientist but my common sense tells me there is a difference between inflammation (RR) and degeneration SP & PP although loss of gray mass e indicates there is also a degenerative component early on in the disease). What causes both no one really knows... The immune theory alone can not explain the whole picture.

Having empirically experienced huge relief from my one-time very brief detox stint at DeadSea-mud (mentioned elsewhere on thisisms forums), I suggest the below factors as blocking repair via MSC's:

(1) toxins such as heavy metals, calcifications, plastics
(2) decline of Notch at same time as increased TGF-beta (see: http://www.sflorg.com/sciencenews/scn061708_01.html

Researchers who achieve both Optimal beta blocker, and first apply Genuine detox (unlike the humongous list cited by online chatters which proved zero help to me)..
...may finally achieve Genuine Regeneration.
Reachable via PM. Seems I have Higbee's HSII on ThisIsMS. Frustrated by MSers, FMers, Lymers & Prematurely-Aged-By-EMFers who prefer cryptic jargonian Systems Vs. Intuitive empirical experience. Don't simple truths count for anything anymore?
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