It`s been 1 year and 1 month

barbara

Pioneer Founding member
SPMS and PPMS

I am always interested in learning about diseases other than what I suffer from. Can someone fill me in on what SPMS and PPMS are. Thanks!
 

Kitson

New member
I am always interested in learning about diseases other than what I suffer from. Can someone fill me in on what SPMS and PPMS are. Thanks!

SPMS is Secondary Progressive MS and PPMS is Primary Progressive MS.


Both types of MS are more agressive and really to date there are hardly any medications to help slow down the disease.

SCT has not shown to benefit people with SPMS or PPMS this is why they are not accepting people in the SCT trials here in the US for those types of MS.
 

ladystewart

New member
MS

SPMS is Secondary Progressive MS and PPMS is Primary Progressive MS.


Both types of MS are more agressive and really to date there are hardly any medications to help slow down the disease.

SCT has not shown to benefit people with SPMS or PPMS this is why they are not accepting people in the SCT trials here in the US for those types of MS.
I was diagnosed with relapsing remitting MS and I think PPMS is after SPMS. PPMS is not diagnosed as much--very rare. I probably should have never stopped the Rebif--but suggested and given pamphlet by neurologist about Novantrone.

I wish there was more available for progressive MS since it seems 'EVERYONE' goes there eventually anyway!!
 

Kitson

New member
I was diagnosed with relapsing remitting MS and I think PPMS is after SPMS. PPMS is not diagnosed as much--very rare. I probably should have never stopped the Rebif--but suggested and given pamphlet by neurologist about Novantrone.

I wish there was more available for progressive MS since it seems 'EVERYONE' goes there eventually anyway!!
I agree, but they claim SPMS and PPMS is a different animal. RRMS is much easier to treat, so I think their goal is to try to medicate those dx early with RRMS so it doesnt progress or slow it down as much as possible.

Also there are a lot more people with RRMS vs SPMS and PPMS so it stands to reason thats why they focus on that group.

I remember reading they started out treating only people with SPMS and PPMS with the STC. None got better and there were some fatalities.

They started RRMS and feel they can halt the disease and I dont believe they have has any fatalities. Mond you this is using chemo and rebooting the immune system.

In europe they dont do that, the treatment might be safer, but the results wont be the same. Not for MS.
 

ladystewart

New member
Medicines

I agree, but they claim SPMS and PPMS is a different animal. RRMS is much easier to treat, so I think their goal is to try to medicate those dx early with RRMS so it doesnt progress or slow it down as much as possible.

Also there are a lot more people with RRMS vs SPMS and PPMS so it stands to reason thats why they focus on that group.

I remember reading they started out treating only people with SPMS and PPMS with the STC. None got better and there were some fatalities.

They started RRMS and feel they can halt the disease and I dont believe they have has any fatalities. Mond you this is using chemo and rebooting the immune system.

In europe they dont do that, the treatment might be safer, but the results wont be the same. Not for MS.
I wish I had stayed on Rebif when dx in 2002 mwith RRMS--too late now!! I will keep all posted!!
 

Kitson

New member
I wish I had stayed on Rebif when dx in 2002 mwith RRMS--too late now!! I will keep all posted!!
I think the disease changes on it's own regardless of what meds we are on. That is what's so confusing about this disease.

There are people dx with SPMS or PPMS from the start. Some people stay RRMS for 20 plus years with very few symptoms.

There is no way to know for sure what causes the disease to change over to SPMS. It is to my understanding PPMS is different from SPMS. SPMS starts out as RRMS. PPMS is just agressive MS. But SPMS and PPMS are pretty much the same as far as progression and disability are concerned.

There is no way to reverse MS unlike other diseases. Stem cells can grow a new brain for us. This is way research for SCT and MS is so crucial. Those of us who have damage it will never go away.
 

barbara

Pioneer Founding member
Never is not a word any more

Kitson - I believe with the daily changes being made in bio technology that never is not a word that can be used in conjunction with it. Just a couple of years ago, there was no hope for many diseases that are now being treated successfully. It's not just stem cells that may be used in the future, so don't ever give up hope.
 

Kitson

New member
Kitson - I believe with the daily changes being made in bio technology that never is not a word that can be used in conjunction with it. Just a couple of years ago, there was no hope for many diseases that are now being treated successfully. It's not just stem cells that may be used in the future, so don't ever give up hope.

biotechnology companies aren't interested in high-risk studies critical in determining whether creative ideas could yield therapies for the 20,000 human diseases that have no cure. They are more interested in repackaging old ideas and compounds in an effort to continue reaping vast returns.

Anyone thinking that any of the powers that be, in the goverment, in the medical field or any other major power is really interested in helping mankind is under some serious delusions.

All they want is to keep making as much money as as they can at any expense.
They dont care about anything else.

That's the worls we live in.
 

barbara

Pioneer Founding member
Kitson-

I think you misinterpreted what I said. I am with you 100 percent that most are interested in making a profit, but is that so very wrong as long as people are getting helped along the way? You sound really down and I hate to read that you really feel that there is no hope and that never is a word that is part of your vocabulary. I just don't share that view. We can agree to disagree.
 

Kitson

New member
I think you misinterpreted what I said. I am with you 100 percent that most are interested in making a profit, but is that so very wrong as long as people are getting helped along the way? You sound really down and I hate to read that you really feel that there is no hope and that never is a word that is part of your vocabulary. I just don't share that view. We can agree to disagree.
Who is getting help along the way? Certainly not people that currently have nothing or very little to help them. It's people with common diseases, that's what I stated. there is not enough money to find cures or even treatments for people with less common diseases.

Neurologocal diseases are the most difficult to treat and not much progress has been made. I know because I live it and I am well aware of my options as well as others who have suffered from a neuro disease for sometime.

Are we negative? maybe some of us, but we also know what's avaliable to us.

Currently stem cells can offer hope for many people, but not for diseases such as MS, ALS or Parkinsons. .... not yet

When they can be of benefit, for those of us who have already suffered a fair amount of damage to our brains/CNS. There is no hope.

Maybe for parkinsons because I dont beleive their brains have any damage that cannot be repaired. ALS and MS are sol.
 

hlichten

Super Moderator
Who is getting help along the way? Certainly not people that currently have nothing or very little to help them. It's people with common diseases, that's what I stated. there is not enough money to find cures or even treatments for people with less common diseases.

Neurologocal diseases are the most difficult to treat and not much progress has been made. I know because I live it and I am well aware of my options as well as others who have suffered from a neuro disease for sometime.

Are we negative? maybe some of us, but we also know what's avaliable to us.

Currently stem cells can offer hope for many people, but not for diseases such as MS, ALS or Parkinsons. .... not yet

When they can be of benefit, for those of us who have already suffered a fair amount of damage to our brains/CNS. There is no hope.

Maybe for parkinsons because I dont beleive their brains have any damage that cannot be repaired. ALS and MS are sol.
If there is no current hope of stem cell based help for your condition, I am very sorry, but I don't see the point of dwelling on it, do you?

If stem cell treatments are not now aiding MS, ALS or Parkinsons, perhaps they never will. Of course I hope that they do, but we simply don't know yet.

Stem cells may likely aid, if not cure many ailments, but they won't end up curing every disease suffered by mankind.

By the same token, when we hear that a doctor at a clinic has achieved improvement for a few people with a certain ailment using stem cells, we can not mistake this for a true, proven cure. When one jaw bone is grown in vitro by a scientist from stem cells, we should consider that amazing and very promising, but that's all the weight we can give to it.

You are ill, and there is no current viable stem cell treatment for you available.

I sympathize with you, and offer any support and comfort that I can, but I am not sure what your negative thoughts accomplish in this case.

This is a forum where you can find out about some advancements, new techniques, new doctors, new clinics and talk about your condition with others. If stem cells are not applicable for you right now, we welcome others to share other medical experiences, drugs, doctors, etc. who may bring you some relief.

But please don't sound like you are being somehow cheated.

I have a condition that HAS been helped in many cases with stem cell treatments, yet I have had two treatments last year and seen no relief, after traveling to 3 different countries (was treated in 2) around the world and spending close to $100,000 cash. I haven't improved, but I haven't given up hope, and I certainly don't feel cheated.

I am definitely not "sol" as you refer to being.

Down on my luck? Perhaps.
SOL? No. :)

I don't think you are either.
Something wonderful could be discovered tomorrow, and could be stem cell related or something totally different.

Our current level of stem cell knowledge is going to seem very simplistic in a few years. That is my prediction.

Hang in there!
 
Last edited:

Kitson

New member
I dont feel cheated. Actually my MS is not that bad or even visable.
Although recently it's attacked me, but again not visable or interfere with my daily life.
I treat my MS is IVIG once a month and it's worked quite well.


What I am bothered about is I see some scared people and thinking this is a cure or even another option which right now it's not.

I hate seeing companies on here or people who know nothing about saying how stem cells helped them walk again or a company offering discounts to members? lol puhleeeese Taking advantage of people who are ill upsets me and I am surprised this forum allows companies to advertise.

There are some valid trials going on here in the US. But it's potentialy fatal because they use chemo. I think people running to mexico or china are taking a great risk. They may not think so and it's their money and body. But the US is not that behind or stupid as many people here try to claim, and if you think mexico or china has better treatment options then so be it.

I have yet to see any success with a patient that came from there.
 

barbara

Pioneer Founding member
Who should pay the bills?

Kitson - You confuse me when you say the US has trials that are potentially fatal, but you would advise against anyone going to Mexico or China or wherever because of the risks. If you would like to rustle up some donations or feel we should charge a membership fee for our forum, we can eliminate forum sponsorships and very possibly lose some members who don't have extra money to participate. We have forum expenses and the sponsors help us defray the costs. Also, if you aren't interested in any of the sponsors, then simply don't click on an icon. How much simpler could that be? I have looked at other medical sites and some forums and we are not alone in allowing sponsorships. I find the information useful and the links handy to be truthful. We have started this forum to help others by having stem cell discussions and members who have had treatment give their stories. You don't seem to believe that stem cells can help with your condition and yet others with MS are seeing improvements. I also feel a good mental attitude is a must no matter what kind of treatment you seek. No one is claiming cures on here. Most members are not doctors. We do not give medical advise. As Harv says, today's information on stem cells is going to seem very pre historic in only a few years. No one is downgrading the U.S. The general consensus that I see is that the U.S. is simply not up to being ready to give treatment to people and many cannot afford to wait. You have an attitude of defeat. I would be laying on the couch with some respiratory problem as usual if I felt like you do. Instead, this year I am full of energy and enjoying my life again. And heavens forbid, I went to Mexico for treatment.
 
Last edited:

hlichten

Super Moderator
...I think people running to mexico or china are taking a great risk...
I think you are missing the entire point of this forum:
We are PRIMARILY here for people who have taken these risks, or are contemplating taking these risks.

To be sure, we are also here to discuss clinical trials that are available, new stem cell research, doctors, hospitals, clinics, and anything related to stem cells. We are also somewhat of a support group for anyone suffering from a grave illness, or anyone supporting someone who is. We are here to be uplifting or be a shoulder to cry on, whatever is needed.

But, again, I emphasize that we are people who have taken or who may take these risks.

A majority of people here are COPD patients who have taken that risk at a certain clinic in Mexico.

As you can see from my signature, I took TWO RISKS in Thailand and in Germany. Hasn't helped me yet. I spent a fortune last year, but does that make me a fool???

NO. It means that I have the desire to improve my existence, after trying every drug, therapy and treatment option available for my cardiac disease in the USA. Can you understand what I am saying? I HAVE TRIED EVERYTHING! I had a quadruple bypass when I was under 40 years old. I have had more than 15 stents! I had angioplasties. I have had cardiac radiation. I have had EECP. I have had 14 angiograms. I was rejected for transplant. I take enough cardiac medicine to knock out a cow.
I have Class IV angina. I get horrible chest pain by doing such "aerobic things" as: walking down the hall, letting the dog out the door, rolling out the trash can, propping up my pillows. Excruciating chest pain while performing such "olympic activities" as these!!

I am a "no option" cardiac patient. No option, meaning that the USA medical community has no options to offer me.

That is why I went to Thailand and Germany for stem cell treatment last year.

I WOULD DO IT AGAIN IN A MOMENT, IF I THOUGHT THAT IT MIGHT HELP ME.

We are here to help people, plain and simple.
Whatever it takes.

I think, however that "no option" applies to you.
You are simply being negative about what we are all about here, and, as such, I have nothing further to offer you.

I wish you well.
 

Jeannine

Pioneer Founding member
kitson

Unless someone is holding a gun to your head or a knife to your back NO ONE is making you come here to our forum. If you're so knowledgable perhaps you should start your own forum because it appears that you are far smarter than we will ever be so I;m sure it would be more successful than ours.

First of all, this site was started to spread the word about stem cells by myself and Barb who had stem cells, saw improvements in our conditions and wanted to help people who had no hope. We wrote a book about our experiences and Barb's son paid for the forum.

The company where we received our stem cells wanted to post an ad on our forum to help us defray costs of paying for the forum. Since then many other companies heard about our site and wanted to advertise as well. I don;t see what the problem is.

This site is not a sales pitch site and is strictly informational and we have not once posted the name of the place we sought treatment because we didn't want it to appear as we had any affiliation with the company, but others who post here have posted the name and phone number.

Since when is offering a discount a bad thing? Why is trying to help folks a bad thing?
 
Last edited:

Jeannine

Pioneer Founding member
In case anyone is interested in the real meaning of a forum and not some anonymous person's interpretation.

The main public square at the centre of a Roman town, which acted as the main meeting place and shopping area.
www.romansinsussex.co.uk/glossary/index.asp

The open air urban space(s) in ancient Roman cities, generally rectangular in shape, defined by the porticoes and civic buildings at its perimiter, and used for marketplace and public interaction, particularly 'civic discussion'. The temple stood prominently at one end of the forum. ...
architecture.arizona.edu/COURSES/arc103/trad103/tutorials/fundamentals/glossary/Roman.html
 
User Kitson

User Kitson is now being placed into a Moderated status.

Her posts have become disruptive to the forum.

Further misconduct will result in permanent banning.


All disruptive posts will be removed by the moderating team.


This is intended to be a freindly online community, please keep that in mind.
 

gailvel

New member
Response to Kitson's remarks

Hi everyone,

I'm new at posting (2nd time) so I'm not sure what the rules are about talking about what a "moderated" person has posted, but I wanted to say that I find it interesting that Kitson expressed such a cynical view of American medicine, that they were only interested in making a buck, yet she came on so strongly supportive of the various medicines available (tysabri, etc) throughout her posts at the exclusion of more daring treatments. Seems somewhat confused to me but I can only hope that she finds some reason to hope. I know for my wife and myself we got that when we met Ed Johns (not to puff you up too much, Ed). We hadn't known him when he was really bad off, but we were very impressed with his report of improvement. It has made it easier to hope that SCT can help us, knowing someone who has done it in person. If I had come across this forum without meeting him I probably would have laughed it off, not reading enough to see how earnest you all are.

She did give me pause, though. She mentioned fatalities from stem cell treatments, especially with people with PPMS. I was under the impression that there had not been any. Does anybody have any references of specific deaths, instead of vague " I read somewhere" statements people use when they are just trying to cast dispersions?

Also, what is IVIG? Does anybody know?
 
Gailvel -

You are free to talk about what is in this thread.

As to the veracity of her statements that there have been fatalities from stem cell therapy, I couldn't tell you.

I can tell you that I have not heard of any fatalaties from this type of therapy prior to Kitson's assertion of same. Additionaly the context of the statement makes it unclear as to whether the fatalities were from the natural progression of the disease, or alleged to have been caused by the treatment.

In my opinion, Kitson's posts seemed confused on some of the details to put it kindly, and no links for proof were proferred.

Take from that what you will.

Technocracy
 
Last edited:

barbara

Pioneer Founding member
Moderated postings

I thought she meant that the treatment that uses chemo could produce fatalities, not stem cell therapy. See how we all read the posts differently! I do not know of a single documented incident of stem cells causing death. The reason this person has been put in the moderated posting format is that we felt she was not adhering to the rules of etiquette. This way if she wants to post again, the moderators have to approve the posting. That's all that it means. We did not ban her because in the past, no behavior like this was exhibited. It is just not something that we have to tolerate. Personal insults have no place on this forum or any forum for that matter especially when the forum is moderated by volunteers. Every person that opts for stem cell therapy is undoubtedly going to get different results. Some will improve more than others. I have no clue what Kitson intended to tell us because she was just flip flopping which I tried to point out to her. We are here to help and try to find answers and encourage intelligent discussion which for the most part, I would say is accomplished.
 
Top