Welcome new MS members

[barbara]

We have had a lot of new members lately that have MS or are caregivers for someone with MS. We would love to have you post whether you are pre or post therapy or just exploring. Also, we do have a caregiver's forum for those that are interested. We look forward to hearing from you.

[sandiselvi]

I am so happy to see this site exists. I have been telling my story for over 7 years now, and finally feel like I am being heard.
In March of 2000 I had a stem cell transplant at Scripps in San Diego. I was the second person to go through their program to see if they could stop the progression of MS. You can read my story on my website www.sandiselvi.com but for now I will give you the short version. I was diagnosed in 1996, symptoms since 1979. I had gone progressive in 1999. I used a cane to walk, had double vision, no bladder control with infections every three months, tremors in my hands, muscle spasms in my back and legs, and the left side of my face was numb. It was a far cry from 1995 when I was coaching soccer, head of my kids art docent program at school, getting ready to take my black belt test in Tae Kwan Do, and running my own painting business called 'Off the Wall Designs' (I painted murals). So, when the doctors approached me with the idea, "MS is your immune system killing you, so if we kill your immune system and build a new one you won't have the problems you currently have." I jumped in with both feet, a cane and my eyes closed tight.
Six months after my transplant, I was in bed feeling sorry for myself, when I jumped up and ran to the bathroom to check out something in the mirror. That was when I realized I had ran, run. I had not been able to do that for years. This was when I realized the transplant had worked. Almost one year to the day after my transplant, I began doing stand-up comedy. I listened to comedy the entire time I was going through my transplant and decided if I ever got better, I was going to try and make everyone in the world feel as good as I did while I was laughing.
I currently do not need a cane, I still have a slight bit of drop foot, but nothing like it used to be. My tremors are completely gone. I have full control of my bladder, in fact last week I had my first bladder infection in 7 years and I knew right away. And added bonus, I am no longer allergic to anything (I used to have a list of 63 things).
The doctors were correct; the stem cell transplant changed my immune system. By looking at me you would never guess that I have Multiple Sclerosis, nor ever had MS. But I do warn those interested in doing this. They did radiate my thyroid, which has played havoc on my eyes and weight. Things I have been able to fix. It also threw me into the far end of Menopause; I don't think anyone can fix that. But the hormones help.
When asked, if I had to do it all over again, would I? The answer I give: YES, in a heartbeat.

[barbara]

We are so happy to have you as a member also. Did you have just one treatment or multiple treatments or how did the program work? You are truly Pioneer material. I am assuming that your weight blossomed and that you had some vision problems that you could correct with lasik or corrective lenses. Is that right? Do you continue to see improvement in your walking ability or are you now to where you think you will be as far as improvements? I don't mean to be too nosy, but this forum is to let others know about stem cell treatment and how patients react to it. We have several forum members that have MS and many inquiries about it. This is your avenue to let others know also. Thank you again for this information. I am intrigued that you are now doing stand up comedy. What a remarkable change you have made in your life by becoming a Pioneer. Your story is very inspiring to me.

[ladystewart]

I want to have surgery! ASAP I was OK typing-that is going down now. USA or another country?? Husband knows people from Mexico and that is looking to be out!! People from Mexico say Mexico is not good. Italy??

[barbara]

Welcome to the forum. I don't have any information on Italian clinics. I do know they are one of the leaders for HBOT Therapy as most of their doctors are trained how to do it, but as far as stem cells, I do not know. Maybe, someone else has heard of something. There are good clinics in Mexico as well as bad, so I am not sure what your husband heard either. I believe they are treating MS at many stem cell clinics in several different countries including Mexico, Germany, Costa Rica, India and the Cayman Islands. There are probably more, but I am not sure how many are doing surgery if that is what you are looking for. Perhaps, some one else knows. I think the U.S. is conducting various clinicals also. Where are you from?

[hlichten]

I want to have surgery! ASAP I was OK typing-that is going down now. USA or another country?? Husband knows people from Mexico and that is looking to be out!! People from Mexico say Mexico is not good. Italy??

As Barabara said, no treatment available in Italy or USA. Trials may be available in USA, but then you have only a 50% chance of getting the real treatment. The only addition to her list of countries might be Thailand or other Asian country. Otherwise it is complete.

I did not have treatment in Mexico, but keep in mind that this is a USA doctor doing the treatment at a clinic there, because he can not do it in USA. Mexico health care has had bad press in the past, as in when Martin Luther King went there for treatment, but I don't believe that reputation is relevant here. Again, this is a USA company with a USA doctor doing the treatment in Mexico.

Do realize that the list could change at any time.

[ladystewart]

As Barabara said, no treatment available in Italy or USA. Trials may be available in USA, but then you have only a 50% chance of getting the real treatment. The only addition to her list of countries might be Thailand or other Asian country. Otherwise it is complete.

I did not have treatment in Mexico, but keep in mind that this is a USA doctor doing the treatment at a clinic there, because he can not do it in USA. Mexico health care has had bad press in the past, as in when Martin Luther King went there for treatment, but I don't believe that reputation is relevant here. Again, this is a USA company with a USA doctor doing the treatment in Mexico.

Do realize that the list could change at any time.

I will see my Neurologist 1/14/2008 and hopefully she will know exactly where to go.

I was born in Baltimore, Maryland and now live in Southern California (weather better here--no snow). My mother had MS and passed in 2000. I was DXd in 2002.

Can I use 'out of network' insurance or will I pay out of pocket cash if I go to Mexico?

[ladystewart]

:DI want to have surgery! ASAP I was OK typing-that is going down now. USA or another country?? Husband knows people from Mexico and that is looking to be out!! People from Mexico say Mexico is not good. Italy??


Thank you much for the welcome!!!

[barbara]

Lady Stewart - Don't get upset if your neurologist is not real happy about you wanting to get stem cell therapy. I sincerely hope for your sake that she will encourage you, but many doctors are in the dark about stem cell therapy and insist that only the same old, same old, medicine be used whether it is working for you or not. I also don't think anyone could answer your insurance question. You would need to talk to your insurance company directly. I am told that the procedure and all expenses to get to a clinic are tax deductible. I would encourage you to speak to a CPA or tax consultant to make sure. I am very pleased to have you for a member. Do not give up hope. This is a very nice group of people on here.

[ladystewart]

Lady Stewart - Don't get upset if your neurologist is not real happy about you wanting to get stem cell therapy. I sincerely hope for your sake that she will encourage you, but many doctors are in the dark about stem cell therapy and insist that only the same old, same old, medicine be used whether it is working for you or not. I also don't think anyone could answer your insurance question. You would need to talk to your insurance company directly. I am told that the procedure and all expenses to get to a clinic are tax deductible. I would encourage you to speak to a CPA or tax consultant to make sure. I am very pleased to have you for a member. Do not give up hope. This is a very nice group of people on here.

My Doctor has told me that I should stay away from stemcell at the moment. I do not wish too!!! Insurance is through my husband and I have medicare and 'moolah'. Moolah to do what I wish for a better MS life?--I hope.

[hlichten]

My Doctor has told me that I should stay away from stemcell at the moment. I do not wish too!!! Insurance is through my husband and I have medicare and 'moolah'. Moolah to do what I wish for a better MS life?--I hope.

You have to understand that very few doctors in the USA who have been through 10+ years of school are going to recommend to their patients that they get on a plane, leave the USA and go somewhere for a stem cell treatment. My internist referred to it as "Star Wars" but said he understood why I wanted to go. My cardiologist is also very intelligent, and realized that I have exhausted all conventional options.

Yes, you can forget about insurance and medicare when you go for treatment. It is cash only, and you can spend a lot of "moolah" on it, as you say.

I spent over $85,000 on 2 treatments in 2007 including travel, hotels, and expenses, but the first treatment cost 4 times what the second one did in Germany. Live and learn!

[barbara]

One thing you need to be aware of LadyStewart is that stem cell therapy is not an overnight fix. Most MS patients do require boosters. The road is slow and sometimes bumpy, but in the long run, I have yet to hear from an MS patient who got nothing from the therapy. We all dream of a day when one treatment gets us back to normal very quickly, but that just isn't the case at this time. We are fortunate to have stem cells as an option, but keep in mind that the therapy is still in its pioneering stage.

[Kitson]

My Doctor has told me that I should stay away from stemcell at the moment. I do not wish too!!! Insurance is through my husband and I have medicare and 'moolah'. Moolah to do what I wish for a better MS life?--I hope.


I have to agree with you, I am looking into SCT as well for my MS. You sound pretty scared, which is normal and I totally understand but be careful where you go. Right now you can check out one of these, they are non randomized which is good!!
http://www.clinicaltrials.gov/ct/show/NCT00288626

Insurance pays for it.

The risk is greater, but the results are better as well, plus you are in the US and follow up care if so important and eaiser for you in the long run.

I was advised to avoid going outof the country for various reason which I wont go into here, I don't want to start a debate.

Do your own research, talk to your neuro's, call the numbers on the link I posted. You don't need to listen to me or anyone else on the internet ( I wouldn't), This is YOUR health. Just please do your own research on the medical facilities and physcians involved.

Good luck

[Jeannine]

Kitson

Going through chemotherapy is far more dangerous and debilitating than receiving stem cells could ever be.

As far as after care for stem cells, as far as I know most folks would return to their regular physicians so I'm not sure what you mean about out of the country being more dangerous.

I can tell you plenty about some of the medical care received in this country that is far less than optimal.

[Coqui5]

Hi my name is Gerry, have SPMS, and new to this site. I'm currently in the process of being evaluated for treatment in Germany in Excell. Has anyone have any feedback of this clinic/treatment? I'm very anxious. If any one has information I'll be most grateful. :confused:

[kandiah seevaratnam]

I am so happy to see this site exists. I have been telling my story for over 7 years now, and finally feel like I am being heard.
In March of 2000 I had a stem cell transplant at Scripps in San Diego. I was the second person to go through their program to see if they could stop the progression of MS. You can read my story on my website www.sandiselvi.com but for now I will give you the short version. I was diagnosed in 1996, symptoms since 1979. I had gone progressive in 1999. I used a cane to walk, had double vision, no bladder control with infections every three months, tremors in my hands, muscle spasms in my back and legs, and the left side of my face was numb. It was a far cry from 1995 when I was coaching soccer, head of my kids art docent program at school, getting ready to take my black belt test in Tae Kwan Do, and running my own painting business called 'Off the Wall Designs' (I painted murals). So, when the doctors approached me with the idea, "MS is your immune system killing you, so if we kill your immune system and build a new one you won't have the problems you currently have." I jumped in with both feet, a cane and my eyes closed tight.
Six months after my transplant, I was in bed feeling sorry for myself, when I jumped up and ran to the bathroom to check out something in the mirror. That was when I realized I had ran, run. I had not been able to do that for years. This was when I realized the transplant had worked. Almost one year to the day after my transplant, I began doing stand-up comedy. I listened to comedy the entire time I was going through my transplant and decided if I ever got better, I was going to try and make everyone in the world feel as good as I did while I was laughing.
I currently do not need a cane, I still have a slight bit of drop foot, but nothing like it used to be. My tremors are completely gone. I have full control of my bladder, in fact last week I had my first bladder infection in 7 years and I knew right away. And added bonus, I am no longer allergic to anything (I used to have a list of 63 things).
The doctors were correct; the stem cell transplant changed my immune system. By looking at me you would never guess that I have Multiple Sclerosis, nor ever had MS. But I do warn those interested in doing this. They did radiate my thyroid, which has played havoc on my eyes and weight. Things I have been able to fix. It also threw me into the far end of Menopause; I don't think anyone can fix that. But the hormones help.
When asked, if I had to do it all over again, would I? The answer I give: YES, in a heartbeat.
HI SADISELVI MY NAME IS SEEVA FROM SYDNEY AUSTRALIA PLEASE LET ME KNOW WHAT YOU THINK ADULT STEMCELL TRANSPLATION TO TREAT M.S. I AM THINKING TO GO TO GERMANY XCELL CETER END OF THE YEAR. THAY USEING PATIENT OWN BORNMORROW AND INJECT BACK BY LUMBER TAP. NO CHEMOTHERAPY NO EMBRONIC CELL ANY ONEELSE. ALADY FROM CANADA IS IN GERMANY NOW FOR THE TREATMENT. BUT MY NEURO IN SYDNEY NOT SUPPORTING ANY KIND OF SCT FOR M.S. NRXT WEEK I AM GOING TO SEE HIM TO GET HIS APPROVAL PLEASE LET ME KNOW YOUR OPENION ABOUT ADULT STEMCELL TREATMENT BY XCELL CENTER
REGARDS:mad:

[gator871]

Great to be on this site.
I am going to Mexico Sept 27th 2009, for my MS treatment with stem cells. I am a 54 year old male with primary progressive MS since 06. I did two years of research all over the world and chose this clinic in Mexico as it gives you the most stem cells of any clinic I researched. More stem cells mean a better chance for recovery and possibly less need to come back for further treatments. The Docs seem top notch and I have only read great things about the clinic. Also travel is simple: just into San Diego, cross the border and the clinic is 2 miles over the border. They pick you up at the San Diego airport; take you across the border, and to your hotel-which is included in the price of the treatment! No costly international travel with hotels for the longer stay. Also, it is only a 6-day time commitment! I am going to be blogging here about my journey, but if you want more info feel free to contact me at fairtaxgodfather@yahoo.com. Best wishes to all and wish me luck with my stem cells! Rich

[barbara]

You don't mention what clinic. I hope you aren't going to Cellulogix International or Regenecell. These companies are one in the same in Tijuana. Cellulogix is red flagged on this forum for good reason. Can you tell us what your 6 days of treatment will involve? Also, the type of cells are very important. What type of stem cells will you be getting. More is not better if the wrong type of stem cells are given. I hope you can elaborate a bit more for us.

[gator871]

Barbara,
www.stemcellsforhope.com is the website and the clinic is staffed by Dr Gustavo Andrade and other Docs from The Institute of Chronic Disease ,San Ysidro ,CA 92173 . They do stem cells from marrow and mix in some cord blood cells that come from a Cal. cord blood bank. They use a proprietary method that boosters the immune system first, then increases white blood cell count prior to removing stem cells from your tibia. All procedures minor and very painless. They have a great Neuro who does a wonderful epidural to get the cells in from what I am told. I have talked with and blogged with quite a few happy MS patients who are seeing great results from this clinic, some documented in articles in American newspapers. This clinic gets great stem cell counts as a result of this method and from my other posts on this site here is a clinical paper quote on bone marrow stem cells; and this is also a good explanation the science and theory of why I chose this clinic:
"Whether the transplanted stem cells are responsible for the functional improvement seen in some MS patients who undergo HSCT, or whether stopping inflammation may allow the brain to repair itself is unclear, but understanding these mechanisms might lead to treatments to enhance and encourage remyelination. This is the focus of research on mesenchymal stem cells. These are stem cells derived from the bone marrow that have immune-suppressing and regenerative properties and in theory may be capable of repairing the brain damaged by MS."

If anyone wants to know who to contact I can get it to them if the email me at fairtaxgodfather@yahoo.co or respond to this post.
I hope this is helpful.
Rich G

[barbara]

Thank you. I hope that after your treatment you will continue to update us. Before treatment, one only has to go on what they have been told by someone else, so please keep in touch with us. This forum is always interested in learning about new, reputable, safe clinics and stem cell treatments. I wish you all the best and look forward to hearing more from you when you get back.
Don't forget your passport!

[gator871]

thanks Barbara
I am so excited, it is only 9 days away! I am hopeful but also realize I will still be a MS patient after the stem cells. Perhaps just a faster moving one!
I will post an update, perhaps start a new thread and use it to document my progress?
Rich

[barbara]

I wish you all the best. I agree with you about starting a new thread. This one needs to be put to rest. How long will you be gone? I look forward to hearing all about your treatment. Keep all your thoughts positive.

[gator871]

I will be in the clinic 5 days and will perhaps blog from there on your blog!
Rich

[gator871]

Barbara
Here is a thought. Perhaps you can start a area (rather than a new thread)on your site exclusively for blog entries of folks who have had stem cell treatment so they can chronicle their progress there. (or do you have that?) As it is now, people all do their own blogs about their treatment results and experience. The problem with that is for those of us who want to follow these folks, we have to search all over the net and see who had stem cells done and how they doing. Sometimes this means going to 20-30 blogs. I am going to blog only on your site because it is set up already and then I know others will see my posts. If all the people who had stem cells done would use one blog it would be great and easy to follow. And having you to moderate is a benefit also, with your knowledge!
What do you think?
Rich
7 more days till Mexico and my new stem cells! Stayin positive!

[barbara]

Barbara
Here is a thought. Perhaps you can start a area (rather than a new thread)on your site exclusively for blog entries of folks who have had stem cell treatment so they can chronicle their progress there. (or do you have that?) As it is now, people all do their own blogs about their treatment results and experience. The problem with that is for those of us who want to follow these folks, we have to search all over the net and see who had stem cells done and how they doing. Sometimes this means going to 20-30 blogs. I am going to blog only on your site because it is set up already and then I know others will see my posts. If all the people who had stem cells done would use one blog it would be great and easy to follow. And having you to moderate is a benefit also, with your knowledge!
What do you think?
Rich
7 more days till Mexico and my new stem cells! Stayin positive!


I think it's a great idea, however, many people do not understand that it is difficult to find all of these blogs online. They get home from treatment and are bursting to tell the world and so they start a blog. Many of us will never even know about it just as you mention or will tire of visiting so many sites.

Now for the bad news. I am not allowed to even go near the technical side of this forum. I don't know that that is wholly deserved, but that's the way it is. I will make sure Jeannine sees this and will also ask Darin (my son who gave us the forum) if there is something along these lines that could be done.

I wish you a wonderful trip and look forward to hearing from you when you get back.

[barbara]

Good news Gator871 and everyone else that likes to blog. We were able to purchase a software package that allows individuals to set up their own blogs using this forum. It has been installed and once Jeannine has had time to digest how it all works, it is good to go for you and anyone else that would like to use it. Details to follow very soon I hope.

Yours was a great idea and I hope that many will take advantage of it because it is difficult to find all the individuals blogging out there that have had treatment.