tag:blogger.com,1999:blog-5197453140110938813.post6914120155850048998..comments2023-11-14T12:40:57.985-08:00Comments on The Cure for Multiple Sclerosis: The Science Behind Stem Cell Transplantation to cure MSGeorge Gosshttp://www.blogger.com/profile/17638152626591558770noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-5197453140110938813.post-15850571592645268182014-05-02T07:20:56.016-07:002014-05-02T07:20:56.016-07:00Hi George,
It was really relieving and encouragin...Hi George, <br />It was really relieving and encouraging to hear you(I can't see clear) talk and seemed like our symptoms are kind of similar. I was diagnosed with MS in June 2010 due to optic neuritis and underwent HSCT by Dr Burt in DEC 2012 I am waiting to see any major improvement though I feel I am experiencing improvement as there was a patch in my vision that I could not see at all before I got the HSCT which is gone now . I see everything now but I see shadows only. Sorry for this long message but just wanted to know how/when did you experience any improvement. Please feel free to ask/share anything. God bless. ThanksAnonymoushttps://www.blogger.com/profile/16105635641702427799noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-82323379121457620972014-03-24T00:18:45.061-07:002014-03-24T00:18:45.061-07:00Sincerely thanks very much for your kind comments,...Sincerely thanks very much for your kind comments, Analisa. I plan to make some posts about relevant topics on a more frequent basis.George Gosshttps://www.blogger.com/profile/17638152626591558770noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-58416836655454662662014-03-24T00:14:58.157-07:002014-03-24T00:14:58.157-07:00Thanks very much, Joseph. You are absolutely corre...Thanks very much, Joseph. You are absolutely correct! I have added SPS to the list of autoimmune disorders that can and does benefit from HSCT.<br /><br />There are so many more hematologically-rooted autoimmune disorders that can benefit from HSCT that I am far short of listing them all.George Gosshttps://www.blogger.com/profile/17638152626591558770noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-56741361791375211282014-03-11T06:11:23.084-07:002014-03-11T06:11:23.084-07:00I am one of the Admins of a Facebook Stiff Person ...I am one of the Admins of a Facebook Stiff Person Syndrome (333.91) group and would like to correct the omission of our autoimmune disease from your list above. We currently have our third patient in recovery at Ottawa, one in treatment at Seattle, and another accepted and wrangling insurance for University of Michigan. One or two are in discussions with Denver. "SPS" is when the autoimmune GAD65ab that usually attacks the pancreas and causes diabetes, instead attacks neurons. Symptoms include the finest blend of MS, Parkinson's and tetanus; with the side effects of current drug treatments - heavy benzos, such as Valium, pain medications, IVIg, Plasmapheresis, or rituxibub. The disease is progressive but our early HSCT patients have reported near total recoveries. Joseph Meyersonhttps://www.blogger.com/profile/11471908624147737874noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-82865632512897699242013-06-12T03:54:47.110-07:002013-06-12T03:54:47.110-07:00Very nice post. I just stumbled upon your weblog a...Very nice post. I just stumbled upon your weblog and wished to say that I've truly enjoyed surfing around your blog posts. In any case I will be subscribing to your feed and I hope you write again very soon.<br /><a href="http://hair-turkey.com/" rel="nofollow">Fue Hair Transplantation<br /></a><br />analisa jainhttps://www.blogger.com/profile/05544894674276613675noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-78123469493940217852013-01-07T09:26:47.665-08:002013-01-07T09:26:47.665-08:00Excellent question about the side effects of HSCT ...Excellent question about the side effects of HSCT treatment, as drugs of all sorts have side effects of one type, or another. There are two distinctly different HSCT treatment protocols that have slightly different side-effect profiles; myeloablative HSCT (the same that I had) which has more side effects and non-myeloablative HSCT that has fewer side effects. However, both share the effects of temporary hair loss and temporary fatigue that lasts several months following the transplantation. I discuss in a little more detail on the following page: http://themscure.blogspot.com/2011/06/getting-into-hsct-treatment-if-you-have.html George Gosshttps://www.blogger.com/profile/17638152626591558770noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-77252910321441749282012-11-19T23:01:13.447-08:002012-11-19T23:01:13.447-08:00Hello, George - I have some questions regarding an...Hello, George - I have some questions regarding any side effects of the chemo that was done to "wash" the stem cells before being reintroduced into your body. I was in a cladribine trial about 2 years ago, and still believe, despite the "wash out" period I was told about, that it has caused my health to deteriorate pretty rapidly in the past 18 months. If I were to get into an HSCT trial, what could I expect as chemo side effects and would they cause other physical problems?ADULT STORY TIMEhttps://www.blogger.com/profile/15655323808104045020noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-41696355691120518602012-03-10T20:31:24.703-08:002012-03-10T20:31:24.703-08:00It is definitely worth while. Do lots of research ...It is definitely worth while. Do lots of research cuz there are scams out there. If you are in US & disabled you should qualify for SSDI & Medicare. Medicare covers Dr. Burt's HSCT. My husband Marc Coppins got his transplant in May 2011, so almost a year ago. See http://www.MarcStemCell.com for more info.Good luck to you!Barb Coppinshttps://www.blogger.com/profile/09850226836274374542noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-15142601215775456022012-03-10T20:28:08.012-08:002012-03-10T20:28:08.012-08:00If you are in US & disabled you should qualify...If you are in US & disabled you should qualify for SSDI & Medicare. Medicare covers Dr. Burt's HSCT. My husband Marc Coppins got his transplant in May 2011, so almost a year ago. See http://www.MarcStemCell.com for more info.Barb Coppinshttps://www.blogger.com/profile/09850226836274374542noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-72933306579156882252012-01-05T17:11:36.663-08:002012-01-05T17:11:36.663-08:00Hi George
Congratulations on your success. My wife...Hi George<br />Congratulations on your success. My wife has been diagnosed for over a year now and since diagnoses has had two relapses. She has now moved to Tysabri as a treatment which she seems to be tolerating well and has shown good signs of improvement. This is best course of action for now, but in the longer term we are looking for solutions. <br />HSCT is exciting but at the same time very intimidating. Thank you for such an informative blog your imformation is of great help to us who are looking for answers and dont have a decade to wait. <br /><br />Best Regards<br />KevinAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-43588881759774509012012-01-02T20:16:35.074-08:002012-01-02T20:16:35.074-08:00Hi George,
It's been a little over 6 months s...Hi George, <br />It's been a little over 6 months since your last entry and I am wondering how your tracking? <br />I , like Carmel Turner am from Melbourne Australia and have MS . I am now considering stem cell therapy . This is against the advice of my neurologist and my own brother , who is also a neurologist , both of whom adhere to that oft stated " it's still experimental" line. I have had RRMS over past 20 years but am now experiencing a rapid decline in mobility. I need to do something now as later will be too late. <br />Are you still experiencing the same benefits of the treatment ? Do you still consider it worthwhile? I am eager to hear your experience.. Ps I am an allied health professional . <br /><br />Regards <br /><br />Monique LeventerMoniquehttps://www.blogger.com/profile/10354582128970351577noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-76428534181189808012011-05-21T20:53:43.966-07:002011-05-21T20:53:43.966-07:00Hi Heidi,
The only person that I have first-hand ...Hi Heidi,<br /><br />The only person that I have first-hand knowledge that went to Heidelberg to have HSCT treatment for MS is myself. The outcome is that my MS disease activity completely stopped and my pre-existing MS symptoms have improved 40%.<br /><br />Regards,<br /><br />GeorgeGeorge Gosshttps://www.blogger.com/profile/17638152626591558770noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-20897032112834814262011-05-21T14:04:19.818-07:002011-05-21T14:04:19.818-07:00Hi George-
Do you know what the outcomes are on th...Hi George-<br />Do you know what the outcomes are on the anyone who has used the Heidelberg Hospital for the HSCT for ms? Positive and negative?<br />Heidiheidistrausshttps://www.blogger.com/profile/11581058833702402419noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-88715962938856169992011-05-21T11:04:04.798-07:002011-05-21T11:04:04.798-07:00Hi Heidi,
I've been having a difficult time f...Hi Heidi,<br /><br />I've been having a difficult time finding available hospital facilies around the world that will perform this HSCT procedure (since it is a complex and sophisticated procedure that must be done properly to be safe). I have not checked everywhere in the world so there must be places that I am unaware of. However, I am aware of the place that I went (Heidelberg University Hospital) that will perform myeloablative HSCT for multiple sclerosis. Also, although I have no first hand experience with this facility, I understand that CTCI in Tel Aviv, Israel [http://ctcicenter.com/index.php] will perform the non-myeloablative protocol for multiple sclerosis. (So far both protocols have shown substantially similar very good curative results at several years out.) If I had my drothers (and also because a "clean" facility is high on your priority list), I personally would aim for Heidelberg's treatment since I personally think it has a better chance of lifetime cure success.<br /><br />You are welcome to e-mail me and I'm happy to share whatever information I can. My e-mail address is georgegoss@yahoo.com<br /><br />Best regards,<br /><br />GeorgeGeorge Gosshttps://www.blogger.com/profile/17638152626591558770noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-85394245336178703752011-05-21T09:05:12.434-07:002011-05-21T09:05:12.434-07:00Hi George,
First of all thank you for taking the t...Hi George,<br />First of all thank you for taking the time to put down your experience with hsct. I have been searching for details on stem cells, and your info was very detailed. Diagnosed with progressive ms with relapes at Mayo last month. Initial diagnosis was RRMS from a local nuerologist. I have made the decision to move forward with the hsct asap. Any info you can give to speed this process would be greatly appreciated. I am located in Wisconsin and willing to travel anywhere. I have been told to go to a "clean" country.<br />Heidiheidistrausshttps://www.blogger.com/profile/11581058833702402419noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-31854362131790068402011-01-13T19:06:40.239-08:002011-01-13T19:06:40.239-08:00Hi Debbie, I'm sorry to hear about your son...Hi Debbie, I'm sorry to hear about your son's recent diagnosis of MS. However, if your son is interested in HSCT as a treatment option, then the diagnosis being "recent" is a good thing since HSCT performed as early as possible following RR diagnosis portents the absolute best probability of completely curing his MS! Also, I'm sorry if my posting has caused some confusion. . . . I am not aware of the University of Basel doing any MS (or other) treatment involving HSCT. I only know of their retrospective study compilation technical papers based upon various studies of HSCT from around the world that I have listed on this page. As far as treatment locations go I can only comment regarding treatment details from the Heidelberg University Hospital where I had my own treatment performed (I had a very good experience). My total cost ended up being approximately 55,000 Euros plus approximately $10,000 for travel and housing costs from California. All told it came to about half the cost of treatment in Dr. Burt's clinical trial here in the US. But I'm sure there must be other places (hospitals) around the world that will also perform the procedure for those with MS. I believe the Apollo Hospital Network in India will do it. And I'm confident that the final price tag will be less than what my own treatment cost me. This is where your own research will be very beneficial. Interesting you ask about treatment efficacy. . . that's an excellent question that I am surprised I am not asked about more often. Dr. Burt's MIST treatment protocol is "Lymphoablative" (eliminates reactive T-cells but does not completely wipe out the bone marrow stem cells). The treatment I had was "myeloablative" (completely wipes out the bone marrow stem cells prior to autograft re-infusion & engraftment). To date both protocols have shown substantially similar (very good) curative results at several years out from treatment. The open question in my own mind is "how long will these two different therapies result in stopping the progression of the MS disease activity?" Is it lifetime, or only temporary? Only the continuing population study over a longer period of time will actually tell us the answer with the greatest degree of confidence. However, I decided to go with a myeloablative therapy instead of the lymphoablative therapy for one simple reason. . . . myeloablation results in total loss of immune memory via the surrogate indicator that people lose childhood immunity and require re-vaccination. Dr. Burt's lymphoablative protocol does not require re-vaccination for childhood diseases. My own theory on this is that lymphoablation does not actually completely 100% reset the body's underlying defective autoreactivity that causes MS, and makes me fearful that the treatment "might" not result in a lifetime cure. But this is only my fear, as I have no data or evidence to suggest that this is actually the case as my assumption might very well be wrong. But for my own treatment I decided to be overly conservative to ensure the best possible chance (in my own mind) that I was receiving the best chance of a lifetime cure of my MS with a myeloablative (BEAM) protocol. Regardless of the final results with Dr. Burt's lymphoablative treatment, I believe that I have most likely achieved an enduring lifetime cure with the protocol I received. So far, so good. My sincerest best wishes for your son’s good health! GeorgeGeorge Gosshttps://www.blogger.com/profile/17638152626591558770noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-58715893959012537372010-12-26T14:17:51.689-08:002010-12-26T14:17:51.689-08:00George: thank you for hosting this site. My 21 yea...George: thank you for hosting this site. My 21 year old son was recently diagnosed after experiencing optic neuritis & MRI confirmation. Do you know if the University of Basel, Switzerland's program is as effective as Dr.Burt's? Do you know the cost? <br /><br />We are determined that our son receive treatment sooner rather than later.<br /><br />Best regards,<br />DebbieUnknownhttps://www.blogger.com/profile/17012199508496313795noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-37289847918138403812010-12-20T20:36:36.145-08:002010-12-20T20:36:36.145-08:00Hi Lori,
My congratulation and respect for you de...Hi Lori,<br /><br />My congratulation and respect for you deciding to take control of your MS, instead of the other way around.<br /><br />I completely understand your concern. . . . unfortunately both trials in the US are very expensive (last I heard well over $200K for Seattle's HALT and close to $150K for Chicago's MIST). It's especially concerning since the majority of participants must pay on their own. However, overseas treatments may be a less-costly alternative, if it were to come to to that. Likely less than half the price.<br /><br />Stay strong! Once completing the transplantation procedure you can likely look forward to a life of progression-free MS. And improvement on top of that!<br /><br />I hope you will have the opportunity to keep me updated. <br /><br />My very best regards to you and your family,<br /><br />GeorgeGeorge Gosshttps://www.blogger.com/profile/17638152626591558770noreply@blogger.comtag:blogger.com,1999:blog-5197453140110938813.post-54846454216625555692010-12-20T19:35:25.645-08:002010-12-20T19:35:25.645-08:00I'm trying to have a stem cell transplant done...I'm trying to have a stem cell transplant done either in Seattle or Chicago via one of the studies. The issue is insurance and funding. I know it's the only cure, and I'm terrified of what will happen if I don't.Lorihttps://www.blogger.com/profile/06813158310967768299noreply@blogger.com