It`s been 1 year and 1 month

Ed Johns

Banned
Since my first treatment,and I am doing great.Went to the flea market again 3 weeks ago and walked the whole thing again,1 mile and a half walk,this is the 3rd time.And I went to Dallas with my son,he is going to be going to Iraq in Jan.,to be alone and spend time with each other and also go see the Cowboys play the Rams.I walked the whole stadium in 95 heat,with no problem.Before the cells I would have never gotten out of the cab in that heat,heat kills MS.And walking through all of those people too,what a great day that was,and the Cowboys won too.
I had a hernia operation in Feb. and it has messed up my left side,but that is getting better also since the second treatment in April.Just being so happy again isgreat.
If anyone needs to ever talk please call me anytime,and if I am not here,because I do go out alot now,please leave a message.
908 454 8818,
Hope to hear from you soon,
Ed
 

hlichten

Super Moderator
Where did you have your treatments done, and what type of cells were used?
Glad you are doing so well.
I just had my second treatment earlier this week.
 

sandiselvi

New member
What kind of treatment are you having?

I would like to know what kind of treatments you are both having? Where are you getting the Stem Cells and why you have had to have more than one treatment?
You can e-mail me at sandiselvi@yahoo.com, any time.
Thanks
Sandi
 

sp1d3rdan

New member
Sandi,

I think most people on this message board have gotten stem cell injections but without the radiation therapy that you have had.

Also many of them are getting umbilical cord stem cells. I'm curious as to what works better. It seems that your radiation + stem cells is quite costly but more of a potential cure. However there appears to be a lot of risks with radiation therapy. Whereas if the stem cell injections alone may have some benefit without the harsh radiation and also quite a bit cheaper to try.

I am not a doctor nor do I have an opinion on what works better. I just want to spread the word on what is helping people. I hope that the stem cell treatments will help my condition some day. Right now there has been nothing that suggest s it would work on people with my illness so I will not be taking the plunge just yet.
 

hlichten

Super Moderator
...Also many of them are getting umbilical cord stem cells. I'm curious as to what works better....
Nobody really knows yet.
There seem to be good results overall for the COPD and other pulmonary patients with the cord blood.
The cardiac patients seem to be benefiting more from peripheral, marrow and other autologous cells.

However, cord blood could end up being better for cardiac down the road. It may come down to delivery method, how the cells are processed, what chemical is added to cells as a vehicle, etc. etc. It is all still in the very early stages of discovery and testing.

If you want a treatment, you talk to who you can, read all you can, and make a decision that you hope will lead you to feeling better.

Me...I am still waiting!
Had two treatments this year.
 

barbara

Pioneer Founding member
Harv wins the award

Harv has the dubious honor of receiving the most treatments in one year at different clinics. He even visited another one. The jury is still out for sure on what treatments will work best for what diseases. I have to agree with what Harv says about what may be added to cord blood treatments. I think it is essential that the mix contains growth factors, etc. No clinic is going to tell you their exact formula, but ask away when you speak to a doctor or representative. If they are too evasive for your taste, move on and try another clinic. The key is to feel comfortable with the answers they give to your questions. If the talk is all about money and not about how they can treat your disease, I would shy away from that. Of course, at some point, money does need to be mentioned, but if that is the main topic of conversation, move on and try another clinic. When I talked to my stem cell doctor initially, he told me he wanted to make me an expert on stem cell therapy. He said the key was to give me the safest, most effective treatment and to have me understand it. I never felt pressured to "sign up" or anything else. In fact, it was quite casual. I didn't become an expert, but I am convinced that stem cell therapy was my best option.
 

Ed Johns

Banned
Where did you have your treatments done, and what type of cells were used?
Glad you are doing so well.
I just had my second treatment earlier this week.
They use umbilical cord cells,they are the strongest stem cell line available.
Please call me if you have any questions,I would love to tell you all I know.
Ed 908 454 8818
 

hlichten

Super Moderator
They use umbilical cord cells,they are the strongest stem cell line available.
Please call me if you have any questions,I would love to tell you all I know.
Ed 908 454 8818
Yes, but not best for cardiac disease, from what I know.
Anyhow, I have had 2 treatments, not likely to ever have another one.
I had just asked you out of curiosity.
 

Sue B

New member
Ed, I spoke with you in the fall of 2007 regarding stemcell treatment for MS. I had my treatment (cord blood) at the end of October 2007. I am patiently waiting for some results. It has been three months. Could you, or anyone who has MS, give me some insight? Thank you, Sue B
 

Ed Johns

Banned
Ed, I spoke with you in the fall of 2007 regarding stemcell treatment for MS. I had my treatment (cord blood) at the end of October 2007. I am patiently waiting for some results. It has been three months. Could you, or anyone who has MS, give me some insight? Thank you, Sue B[/QUOTE

Sue,
What has happened so far?I have names and phone numbers of people with MS that have gotten the stem cells if you would like to speak to them please call me,908 454 8818.
It takes longer for some people to get things back,and alot of people just look at the one main thing they want back and do not look at the smaller things,I see that happen all the time.
Debbie Huntsman started seeing things at alittle over 3 months ,and I could give you her number too.
Please call me I would really like to see what small things might have come back.The voice and energy plus a feeling of well being always seem to get the MS people first.
Looking forward to your call,
Ed
 

barbara

Pioneer Founding member
Slowly but surely we hope

I don't have MS, but it is the same for me. I started to see little things like being able to sleep on my back. The nice thing about little changes is they do add up. I know we all want to be back to being whole again, but this is a slow process and it will not happen overnight unfortunately. I sure hope that you feel something soon Sue because that is always encouraging and does much for a person's mental attitude. I hope you will continue to post here so that we can follow what happens with you.
 

gailvel

New member
Still deciding

Hi everyone,

I wanted to thank Ed for giving me some of his time tonight- I'm Brian Velcheck, writing under my wife's account. We are in the process of deciding if stem cells are right for Gail- she had MS and her walking, speech, thought, endurance and balance have all gotten worse in the last couple of years. I've been reading these posts for a few weeks now but finally got Gail's account set up right for posting so while I don't have much to say right now I'm glad I can finally say it (thanks Technocracy!) I look forward to communicating with you all over the next few (weeks? months? years>)
Brian Velcheck
 

barbara

Pioneer Founding member
Welcome

We're glad to have you posting. Can you give us a little insight as to what Ed told you? Ed is a super nice guy and likes to talk on the phone, but I also wish he would elaborate just a little more for forum readers when he posts. I know there are quite a few new MS members and it is helpful for everyone to learn what they can from those that have had treatment or are thinking about it and have done some research. Is your wife considering treatment? She sounds like she is in the same predicament that many of us found ourselves in. We were deteriorating and forced to face the facts that things weren't getting better. I sincerely hope that you will find the answers that are right for her. We have other caregivers that post so they will be happy to have you join in.
 

ladystewart

New member
Deciding too??????

Hi everyone,

I wanted to thank Ed for giving me some of his time tonight- I'm Brian Velcheck, writing under my wife's account. We are in the process of deciding if stem cells are right for Gail- she had MS and her walking, speech, thought, endurance and balance have all gotten worse in the last couple of years. I've been reading these posts for a few weeks now but finally got Gail's account set up right for posting so while I don't have much to say right now I'm glad I can finally say it (thanks Technocracy!) I look forward to communicating with you all over the next few (weeks? months? years>)
Brian Velcheck
I am deciding. I have a neuro appt 2/21 and I want to have stemcell therapy. I have MS, birthday 1967, and many of my current symptoms are the same. Dx in 2002 and now using walker--speech has gotten worse, typing, thought etc.......I used to lifeguard, play bball, jog, mountain climb etc......

When I see neurologist I will ask about stem cell treatment for this site and Northwestern hospital stem cell treatment. I feel I am really declining!!! I am not in a wheelchair yet--don't want to be!!

I am thinking about USA and FDA?? Out of USA better--FDA is for USA! There are treatment for cancer patients in other countries!!! My mother in law works at the cancer clinic at Johns Hopkins and many of those patients don't know and are dying because of it!!

Sharon
 

Kitson

New member
I am deciding. I have a neuro appt 2/21 and I want to have stemcell therapy. I have MS, birthday 1967, and many of my current symptoms are the same. Dx in 2002 and now using walker--speech has gotten worse, typing, thought etc.......I used to lifeguard, play bball, jog, mountain climb etc......

When I see neurologist I will ask about stem cell treatment for this site and Northwestern hospital stem cell treatment. I feel I am really declining!!! I am not in a wheelchair yet--don't want to be!!

I am thinking about USA and FDA?? Out of USA better--FDA is for USA! There are treatment for cancer patients in other countries!!! My mother in law works at the cancer clinic at Johns Hopkins and many of those patients don't know and are dying because of it!!

Sharon
Have you even tried Tysabri? There are also a lot of new MS medications in the horizon.

If you want to go to north western for STC, your doctor has to help get you on the program and you have to be a good canidate. If you are already using a walker, I don't believe you would be accepted. They are doing the treatments on mild MS.

Your EDSS has to be able to walk without an aid, you cant be SPMS or PPMS.

You can go out of the country for treatment, thats an option you might look into.
 

ladystewart

New member
Medications tried

Have you even tried Tysabri? There are also a lot of new MS medications in the horizon.

If you want to go to north western for STC, your doctor has to help get you on the program and you have to be a good canidate. If you are already using a walker, I don't believe you would be accepted. They are doing the treatments on mild MS.

Your EDSS has to be able to walk without an aid, you cant be SPMS or PPMS.

You can go out of the country for treatment, thats an option you might look into.
Rebif when diagnosed 2002
Novantrone 2005 --think doctor was looking more at MRI because I walked into his office using a cane only
Tysabri- 5 and 6 -2007 moved from Maryland to California
IVIg - 11 and 12 - 2007 California

I thnk Rebif was working. Nothing working now.
 

Kitson

New member
Rebif when diagnosed 2002
Novantrone 2005 --think doctor was looking more at MRI because I walked into his office using a cane only
Tysabri- 5 and 6 -2007 moved from Maryland to California
IVIg - 11 and 12 - 2007 California

I thnk Rebif was working. Nothing working now.
There are some new meds coming out.

But if you are SPMS or PPMS you wont qualify for SCT here in the US. Read the trials and prereq's.

You can go out of the country, but they use a different method and not real succesful. Although I am sure there will be some people to disagree.. ( maybe 1 or 2) But for advanced MS, right now SCT is still in it's infancy.

It is very frustrating for those of us who suffer with the disease and going down hill. I am no different than you, but I am also aware of the limitations that medical science has to offer me right now.

If your MS is progressing that fast, are you SPMS or PPMS right now? You need to talk to your neuro and find out.

I am sure in the future there will be SCT for all of us, I hope sooner than later. MS has not been kind to be recently either.
 

ladystewart

New member
Neuro Visit

There are some new meds coming out.

But if you are SPMS or PPMS you wont qualify for SCT here in the US. Read the trials and prereq's.

You can go out of the country, but they use a different method and not real succesful. Although I am sure there will be some people to disagree.. ( maybe 1 or 2) But for advanced MS, right now SCT is still in it's infancy.

It is very frustrating for those of us who suffer with the disease and going down hill. I am no different than you, but I am also aware of the limitations that medical science has to offer me right now.

If your MS is progressing that fast, are you SPMS or PPMS right now? You need to talk to your neuro and find out.

I am sure in the future there will be SCT for all of us, I hope sooner than later. MS has not been kind to be recently either.
I think I am SPMS right now. I want to try 'revimune' in the states. An approved drug for sinus infections is used for this (for MS). My sister has terrible sinus problems. MS is my 'sinus' problem. Many on this site have had SCT in other countries. We will see!!!
 
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