Paul's Mexican Journey To Beat MS
Donation protected
My name is Paul Wheeler, currently i have secondary progressive Multiple Sclerosis but lets start from the beginning.
In August 2012 I was diagnosed with Relapsing Remitting Multiple Sclerosis, at that stage, there are lots of Disease Modifying Drugs which can be prescribed for sufferers to try to cut down on the amount of relapses or to help cope with the issues that arise with MS. In March 2013 I was re-diagnosed as moving on to Secondary Progressive MS. Unfortunately there are no drugs to help slow the progression rate once you move into this stage and nothing other than, painkillers really to help with the symptoms.
On a good day, you would wonder what is wrong with me, you would know something wasn't right by the way i walk slightly off kilter but other than that you might not know....if i'm lucky that is. It's certainly the way i would prefer you would think of me but in reality I know that it's not the truth. I will try to explain the real me, the hidden me:-
At the stage i am at now, i walk with a brace on my foot as without it i am unable to keep it raised & without that i am unable to balance myself & trip & fall repetitively. On a bad week i can spend up to 18hrs a day asleep & when awake i am in constant pain, ranging from the mild twinges down my arm to the lying on the floor crying my eyes out in mind numbing agony. I find a shower eases the pain sometimes, so on a lighter note, I'm definitely clean! On a good week i take my pain killing drugs, which is all there is for Progressive MS sufferers, and put up the show face. People ask how i am and i mostly reply 'fine' even when i'm not, as the hardest thing to explain to people is that even when i feel ok, in the back of my mind is the knowledge that i have a progressive condition that at some point will 100% get worse. Every time something new hurts, my back, my legs, my knees, my elbow, my head, etc. i immediately wonder whether this is the time that it's not going to stop or will i be left with not being able to feel something this time, like my legs, will this be the time when i'll end up in a wheelchair? or not being able to feed myself?
The most frustrating thing for me & to those around me is my cognitive issues, i struggle to remember the word i want, & it can be as simple as the word 'Banana', so i end up having to go around the houses, you know the long yellow slightly bent fruit, ah yes Banana thank you.........now why was I talking about a banana? This is if i'm able to speak to you at all without stuttering & spluttering what i want to say! Any stress seems to trip the arm pain or make my cognition worse, as does getting too hot or too cold, so summer & winter are soooooo much fun!
Hopefully most of you will only know me as someone with a sense of humour that is always willing to take the mickey out of any situation, even if it's me that's done something stupid! That's the way I try to be, humour conquers a lot of things & at the worst it stops you thinking about other stuff!
OK, enough about how i feel, i'm really not good at explaining the weirdness in my head.
At the the end of 2015, a Panorama programme was aired, stating a possible cure for MS might be on the horizon. Needless to say I watched the programme avidly and it showed amazing results that were being achieved in a trial that was being done in Sheffield. As the programme went on, I got more & more excited! Could this be what I was looking for? Unfortunately just before the end of the programme it stated that this treatment, called HSCT (Hematopioetic Stem Cell Transplant) is only available for Relapsing Remitting MS. As you can imagine I was gutted!
Upon further investigation we found out that actually the JACIE accredited La Clinica Ruiz in Puebla, Mexico
will give HSCT to progressives that meet a criteria, which as it stands at the moment I do. Obviously this is a private treatment & costs $54,500. As it stands I am on the waiting list which means I have anywhere between 6 months & a year to raise the funds, which, when you add flights for me & a carer & treatments upon return to the UK for 5-6 months, works out at about £45,000. I am also on the cancellations list so I would like to raise the money as soon as possible as the longer I have to wait, the more risk of a decline in my abilities.
I have been accepted to Mexico & I will undergo an autologous transfusion performed by distinguished Mayo Clinic alumnus and award-winning Dr. Guillermo J. Ruiz Argüelles in 2016/17.
Some of you may think that I am clutching at straws or am worrying too much as I’m not that badly affected at the moment but I don’t want to look back in 10 or 20 years & think “I wish I had done it!”. I want more than anything to lose my constant looking over my shoulder feeling, every time i have pain or a new symptom. I know this is a highly invasive treatment but the way I am looking at things is that, at the moment I have 100% chance of at some point getting worse, or a 64% chance of having my progression stopped possibly forever!
OWN STEM CELL TRANSPLANTS OFFER FIRST-EVER MS TREATMENT TO STOP PROGRESSION AND REVERSES DISABILITY
The miraculous, and hopefully permanent, treatment consists of Dr. Ruiz harvesting my stem cells, then knocking out my immune system with a high dose of chemotherapy to kill the Multiple Sclerosis. Afterward, he will re-plant my OWN stem cells to reboot my immune system and stop the progression of this awful disease before, if the worst was to happen, I become bedridden until my death; unable to speak, eat, drink or breathe on my own.
I have 2 fantastic teenage boys and i want to be around & in a fit condition to see them grow older, meet partners & maybe have some grandchildren (there's no rush on that though boys!) I want to be able to enjoy my life with my partner Tina who puts up with so much from me & would love me not to repeat myself so many times for one thing!
Be assured that I welcome any donation no matter how large or small & I am so thankful to you from the bottom of my heart for helping to give me a chance to change my life in an amazing way & hopefully beat this damned disease!
Again thank you,
Paul
Informative Links:
http://www.clinicaruiz.com/hematologia/trasplantes.htm
http://www.economist.com/news/science-and-technology/21688848-stem-cells-are-starting-prove-their-value-medical-treatments-curing-multiple
http://www.msdiscovery.org/news/news_synthesis/322-mo
https://www.youtube.com/watch?v=n-vo-n5awjk
ABSTRACTED CV
Guillermo JoséRuiz-Argüelles MD, FCRP (Glasg), MACP
Training in Internal Medicine (1980) and Hematology (1982) at the Instituto Nacional de la Nutrición Salvador Zubirán/ Universidad Nacional Autónoma de México. Post-doctoral research fellow in Hematology by the Fogarty Foundation in the Department of Hematology of the Mayo Clinic, Rochester, MN, U.S.A (1983). Director General, Centro de Hematologia y Medicina Interna de Puebla, Clinica RUIZ. Director of the Teaching and Research Division of Laboratorios Clínicos de Puebla, Clinica RUIZ. Professor of Hematology in the Universidad Popular Autónoma del Estado de Puebla and the Universidad de las Americas Puebla. Board-certified in Internal Medicine and Hematology. Member of the Academia Nacional de Medicina de México - National Academy of Medicine - of the Sistema Nacional de Investigadores - National Research System, level III (highest) - of the Academia Mexicana de Ciencias - National Academy of Sciences- and of the Comisión de Investigación en Salud de México - Mexican Health Research Committee. Past-president, Asociación de Medicina Interna de México - Mexican College of Physicians - (1989). Past-president, Agrupación Mexicanapara el Estudio de la Hematología - Mexican Society of Hematology - (1993-1995). President of the Mexican Chapter of the Mayo Alumni Association (2008-2013). Member of the Board of Directors of the Mayo Alumni Association (2009-2015). Secretary General of the Interamerican Division of the International Society of Hematology (1996-2005). Chair of Council of the International Society of Hematology (2005-2009). President of the International Society of Hematology (2010-2012). Member of the Committee on Educational Affairs (1999-2002) and of the ad hoc Committee on International Outreach of the American Society of Hematology (1998-2001). Fellow of the American College of Physicians, of the Royal College of Physicians and Surgeons of Glasgow and of the American Society of Hematology.
Awards: "International Fogarty Fellowship 1982", "Luis Sánchez Medal” 1986,1991, 1992, 1993, 1996, 1999, 2000, 2001, 2002, 2006, 2007, 2008, 2009, 2010,2012, 2013 and 2014, the "Jorge Rosenkranz 1987", "EstacioGonzaga 1987", "Aida Weiss 1987, 1989 and 1995", "Everardo Landa1988", "Héctor Labastida 1992", "México Region LaureateAward 1996", of the American College of Physicians, "Premio enCiencias Médicas 1997", of the V Festival Palafoxiano de Puebla, of the"Premio Carso-Funsalud” 1997, 2001, 2003 and 2007 in the area of organtransplantation, the “Ruy PérezTamayo 2000”,the “Premio Nacional de Oncología 2004”, the “Duc in altum” 2006, 2007, 2008, 2009,2010, 2011 and 2012 by the Universidad Popular Autónoma del Estado de Puebla, the “Eduardo Liceaga2006” by the Academia Nacional de Medicina, the “Miguel Otero Arce 2007”, delivered by the president of Mexico in the name of the Consejo General de Salud – General Health Council, the Ignacio Zaragoza Medal, by the Puebla City Major and the.Premio “Roberto Kretschmer Schmidt 2012” by the Academia Nacional de Medicina
Elected Mayo Clinic Distinguished Alumnus in October 2011 and elected Master of the American College of Physicians in April 2013.
Author of 683 papers in international and domestic peer-reviewed journals: 352 papers in full, 75 letters to the editor and 337 abstracts.
( http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=search&db=pubmed&term=%Ruiz-Arguelles%20G%%20[au]&dispmax=50).
Author of 48 chapters in books, editor of seven books and co-editor offour. Editor–in–chief of the Revista deHematologia (México), member of the editorial board of peer-reviewed journals, both domestic (Revista deInvestigación Clínica,Medicina Interna de México, Medicina Universitaria, Revista Médica del IMSS, Gaceta Médica de México and De Medicinis Expertis) and foreign (The Lancet Haematology-England, HemOnc Today - USA, International Journal of Hematology - Japan, Acta Haematologica – Switzerland, Biología & Clínica Hematológica - Spain, Revista Brasileira de Hematologia e Hemoterapia - Brasil, Revista de Oncología - Spain,Hematology / Oncology Stem Cell Therapy - Saudi Arabia and Hematology - England)
In August 2012 I was diagnosed with Relapsing Remitting Multiple Sclerosis, at that stage, there are lots of Disease Modifying Drugs which can be prescribed for sufferers to try to cut down on the amount of relapses or to help cope with the issues that arise with MS. In March 2013 I was re-diagnosed as moving on to Secondary Progressive MS. Unfortunately there are no drugs to help slow the progression rate once you move into this stage and nothing other than, painkillers really to help with the symptoms.
On a good day, you would wonder what is wrong with me, you would know something wasn't right by the way i walk slightly off kilter but other than that you might not know....if i'm lucky that is. It's certainly the way i would prefer you would think of me but in reality I know that it's not the truth. I will try to explain the real me, the hidden me:-
At the stage i am at now, i walk with a brace on my foot as without it i am unable to keep it raised & without that i am unable to balance myself & trip & fall repetitively. On a bad week i can spend up to 18hrs a day asleep & when awake i am in constant pain, ranging from the mild twinges down my arm to the lying on the floor crying my eyes out in mind numbing agony. I find a shower eases the pain sometimes, so on a lighter note, I'm definitely clean! On a good week i take my pain killing drugs, which is all there is for Progressive MS sufferers, and put up the show face. People ask how i am and i mostly reply 'fine' even when i'm not, as the hardest thing to explain to people is that even when i feel ok, in the back of my mind is the knowledge that i have a progressive condition that at some point will 100% get worse. Every time something new hurts, my back, my legs, my knees, my elbow, my head, etc. i immediately wonder whether this is the time that it's not going to stop or will i be left with not being able to feel something this time, like my legs, will this be the time when i'll end up in a wheelchair? or not being able to feed myself?
The most frustrating thing for me & to those around me is my cognitive issues, i struggle to remember the word i want, & it can be as simple as the word 'Banana', so i end up having to go around the houses, you know the long yellow slightly bent fruit, ah yes Banana thank you.........now why was I talking about a banana? This is if i'm able to speak to you at all without stuttering & spluttering what i want to say! Any stress seems to trip the arm pain or make my cognition worse, as does getting too hot or too cold, so summer & winter are soooooo much fun!
Hopefully most of you will only know me as someone with a sense of humour that is always willing to take the mickey out of any situation, even if it's me that's done something stupid! That's the way I try to be, humour conquers a lot of things & at the worst it stops you thinking about other stuff!
OK, enough about how i feel, i'm really not good at explaining the weirdness in my head.
At the the end of 2015, a Panorama programme was aired, stating a possible cure for MS might be on the horizon. Needless to say I watched the programme avidly and it showed amazing results that were being achieved in a trial that was being done in Sheffield. As the programme went on, I got more & more excited! Could this be what I was looking for? Unfortunately just before the end of the programme it stated that this treatment, called HSCT (Hematopioetic Stem Cell Transplant) is only available for Relapsing Remitting MS. As you can imagine I was gutted!
Upon further investigation we found out that actually the JACIE accredited La Clinica Ruiz in Puebla, Mexico
will give HSCT to progressives that meet a criteria, which as it stands at the moment I do. Obviously this is a private treatment & costs $54,500. As it stands I am on the waiting list which means I have anywhere between 6 months & a year to raise the funds, which, when you add flights for me & a carer & treatments upon return to the UK for 5-6 months, works out at about £45,000. I am also on the cancellations list so I would like to raise the money as soon as possible as the longer I have to wait, the more risk of a decline in my abilities.
I have been accepted to Mexico & I will undergo an autologous transfusion performed by distinguished Mayo Clinic alumnus and award-winning Dr. Guillermo J. Ruiz Argüelles in 2016/17.
Some of you may think that I am clutching at straws or am worrying too much as I’m not that badly affected at the moment but I don’t want to look back in 10 or 20 years & think “I wish I had done it!”. I want more than anything to lose my constant looking over my shoulder feeling, every time i have pain or a new symptom. I know this is a highly invasive treatment but the way I am looking at things is that, at the moment I have 100% chance of at some point getting worse, or a 64% chance of having my progression stopped possibly forever!
OWN STEM CELL TRANSPLANTS OFFER FIRST-EVER MS TREATMENT TO STOP PROGRESSION AND REVERSES DISABILITY
The miraculous, and hopefully permanent, treatment consists of Dr. Ruiz harvesting my stem cells, then knocking out my immune system with a high dose of chemotherapy to kill the Multiple Sclerosis. Afterward, he will re-plant my OWN stem cells to reboot my immune system and stop the progression of this awful disease before, if the worst was to happen, I become bedridden until my death; unable to speak, eat, drink or breathe on my own.
I have 2 fantastic teenage boys and i want to be around & in a fit condition to see them grow older, meet partners & maybe have some grandchildren (there's no rush on that though boys!) I want to be able to enjoy my life with my partner Tina who puts up with so much from me & would love me not to repeat myself so many times for one thing!
Be assured that I welcome any donation no matter how large or small & I am so thankful to you from the bottom of my heart for helping to give me a chance to change my life in an amazing way & hopefully beat this damned disease!
Again thank you,
Paul
Informative Links:
http://www.clinicaruiz.com/hematologia/trasplantes.htm
http://www.economist.com/news/science-and-technology/21688848-stem-cells-are-starting-prove-their-value-medical-treatments-curing-multiple
http://www.msdiscovery.org/news/news_synthesis/322-mo
https://www.youtube.com/watch?v=n-vo-n5awjk
ABSTRACTED CV
Guillermo JoséRuiz-Argüelles MD, FCRP (Glasg), MACP
Training in Internal Medicine (1980) and Hematology (1982) at the Instituto Nacional de la Nutrición Salvador Zubirán/ Universidad Nacional Autónoma de México. Post-doctoral research fellow in Hematology by the Fogarty Foundation in the Department of Hematology of the Mayo Clinic, Rochester, MN, U.S.A (1983). Director General, Centro de Hematologia y Medicina Interna de Puebla, Clinica RUIZ. Director of the Teaching and Research Division of Laboratorios Clínicos de Puebla, Clinica RUIZ. Professor of Hematology in the Universidad Popular Autónoma del Estado de Puebla and the Universidad de las Americas Puebla. Board-certified in Internal Medicine and Hematology. Member of the Academia Nacional de Medicina de México - National Academy of Medicine - of the Sistema Nacional de Investigadores - National Research System, level III (highest) - of the Academia Mexicana de Ciencias - National Academy of Sciences- and of the Comisión de Investigación en Salud de México - Mexican Health Research Committee. Past-president, Asociación de Medicina Interna de México - Mexican College of Physicians - (1989). Past-president, Agrupación Mexicanapara el Estudio de la Hematología - Mexican Society of Hematology - (1993-1995). President of the Mexican Chapter of the Mayo Alumni Association (2008-2013). Member of the Board of Directors of the Mayo Alumni Association (2009-2015). Secretary General of the Interamerican Division of the International Society of Hematology (1996-2005). Chair of Council of the International Society of Hematology (2005-2009). President of the International Society of Hematology (2010-2012). Member of the Committee on Educational Affairs (1999-2002) and of the ad hoc Committee on International Outreach of the American Society of Hematology (1998-2001). Fellow of the American College of Physicians, of the Royal College of Physicians and Surgeons of Glasgow and of the American Society of Hematology.
Awards: "International Fogarty Fellowship 1982", "Luis Sánchez Medal” 1986,1991, 1992, 1993, 1996, 1999, 2000, 2001, 2002, 2006, 2007, 2008, 2009, 2010,2012, 2013 and 2014, the "Jorge Rosenkranz 1987", "EstacioGonzaga 1987", "Aida Weiss 1987, 1989 and 1995", "Everardo Landa1988", "Héctor Labastida 1992", "México Region LaureateAward 1996", of the American College of Physicians, "Premio enCiencias Médicas 1997", of the V Festival Palafoxiano de Puebla, of the"Premio Carso-Funsalud” 1997, 2001, 2003 and 2007 in the area of organtransplantation, the “Ruy PérezTamayo 2000”,the “Premio Nacional de Oncología 2004”, the “Duc in altum” 2006, 2007, 2008, 2009,2010, 2011 and 2012 by the Universidad Popular Autónoma del Estado de Puebla, the “Eduardo Liceaga2006” by the Academia Nacional de Medicina, the “Miguel Otero Arce 2007”, delivered by the president of Mexico in the name of the Consejo General de Salud – General Health Council, the Ignacio Zaragoza Medal, by the Puebla City Major and the.Premio “Roberto Kretschmer Schmidt 2012” by the Academia Nacional de Medicina
Elected Mayo Clinic Distinguished Alumnus in October 2011 and elected Master of the American College of Physicians in April 2013.
Author of 683 papers in international and domestic peer-reviewed journals: 352 papers in full, 75 letters to the editor and 337 abstracts.
( http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=search&db=pubmed&term=%Ruiz-Arguelles%20G%%20[au]&dispmax=50).
Author of 48 chapters in books, editor of seven books and co-editor offour. Editor–in–chief of the Revista deHematologia (México), member of the editorial board of peer-reviewed journals, both domestic (Revista deInvestigación Clínica,Medicina Interna de México, Medicina Universitaria, Revista Médica del IMSS, Gaceta Médica de México and De Medicinis Expertis) and foreign (The Lancet Haematology-England, HemOnc Today - USA, International Journal of Hematology - Japan, Acta Haematologica – Switzerland, Biología & Clínica Hematológica - Spain, Revista Brasileira de Hematologia e Hemoterapia - Brasil, Revista de Oncología - Spain,Hematology / Oncology Stem Cell Therapy - Saudi Arabia and Hematology - England)
Organizer
Paul Wheeler
Organizer
