It's been four years since The Greek from Detroit died. He suffered from PPMS.
I come back every so often to see what is new, and you know what is so sad?
Nothing is new. There are no cures, no clue as to cause and constant progression for most.
Unlike the HIV world wide groups, not enough unified pressure has been put on governments to
focus on finding a cause and successful treatment. It is a global problem,
centered in the most advanced countries with the most money to fund research.
Something is very wrong with this picture.
Progress?
Re: Progress?
"Something is very wrong with this picture."
MS is an extremely complicated illness.
My dad was diagnosed around 50 years ago and frankly little more is known now.
MS is an extremely complicated illness.
My dad was diagnosed around 50 years ago and frankly little more is known now.
Re: Progress?
I don't agree at all that nothing is new. Yes, if one is seeking a single cure-all drug, that doesn't exist, and it never will because the causes of MS are varied, while being the same "disease". If I had known that MS is a problem of fluid (blood, cerebro-spinal) through the central nervous system (brain, spine) I wouldn't need a cane today. Now that I do know the progression has diminished, I know what to do.Moom9335 wrote:It's been four years since The Greek from Detroit died. He suffered from PPMS.
I come back every so often to see what is new, and you know what is so sad?
Nothing is new. There are no cures, no clue as to cause and constant progression for most.
Unlike the HIV world wide groups, not enough unified pressure has been put on governments to
focus on finding a cause and successful treatment. It is a global problem,
centered in the most advanced countries with the most money to fund research.
Something is very wrong with this picture.
What is particularly tragic in the case of the Greek from Detroit is that the Chiropractor Dr. Michael Flanagan (CCSVI-CCVBP) could have probably helped him, at least helped him understand the problem; I only know what I read on the Wheelchair Kamikaze blog, that the Greek worked in construction, developed PPMS in his forties, and one day walking out to the mailbox his legs failed so that he couldn't walk back to the house. This implies to me that he injured his spine in construction work which meant a bone or some skeletal factor shut off the spinal fluid or impacted the spine which is why he suddenly couldn't walk. A FONAR upright MRI could have revealed how the spinal fluid was circulating, if there were obstructions or injury to the spine. (Sorry if I've misunderstood the issues.)
I began consulting this site at about the time the Greek died so could have had no input and was just beginning to understand the various issues.
I'm so sorry for your loss.
Best regards, Vesta
Re: Progress?
Vesta, what would you have done differently?
Re: Progress?
ElliotB wrote:Vesta, what would you have done differently?
Greetings:
The moment I developed symptoms I would have treated myself with the TENS electrical stimulation on Acupressure points, especially if I was stressed and upset. I have a small unit with 4 pads, 4 leads, and after attaching the pads to the upper back gall bladder 21 points, or number 34 at the knee, with additional yin points for balance. its not complicated at all. And that will stop the attack point blank. OR have my husband massage my back, both of us standing, he works the upper back and then works down the muscle bands parallel the spine (less than a minute treatment.) That releases the blood flow. Dr. Owiesy's idea that the smooth muscles of the vein go into spasm which cuts off the blood flow from the brain fits perfectly my experience, because why should such a simple treatment bring instant relief? It must release the spasm. What kills me is that I had the device in my closet all these years (since summer 1993) and didn't use it because I listened to an acupuncture doctor who said it wouldn't be very effective. It's not as profound a treatment as a good acupuncture treatment, but it gets the blood flowing for me.
I would have kept regular Osteopathic appointmens (or Chiropractic) to maintain the integrity of the body structure as well as acupuncture.
I go into detail on my site, MSCureEnigmas.net
Even recently I was feeling all tensed up and couldn't sleep, I did the treatment which often feels like nothing has happened, but later realized I had calmed down. Same thing when the head feels congested. A good swim will release fluid circulation. Whatever you can do, DON'T WAIT. It's now when the damage is being done that you must stop it. (I now realize I stopped my first big attack with a Shiatsu massage just when the Neurologist wanted to launch me on steroids.)
Best regards, Vesta
Re: Progress?
Vesta,
Thank you for your input.
It would take me an entire page to delineate the treatments that George tried for extended periods of time.
His disease was progressive from the start. He did all of the things you have mentioned and many, many more.
Yes, MS is a complicated disease and varies with the person.
But, none of what he did or tried slowed his progression just as it has not slowed Wheelchair Kamikazi, Jason DaSilva
or Mitch from Enjoying the Ride. I'm sure that there are many others who have not seen improvement regardless of treatment
and just do not read this site or are severly incapacitated or dead.
I wait and hope for a successful treatment or cure but still maintain my position that not much has changed.
Thank you for your input.
It would take me an entire page to delineate the treatments that George tried for extended periods of time.
His disease was progressive from the start. He did all of the things you have mentioned and many, many more.
Yes, MS is a complicated disease and varies with the person.
But, none of what he did or tried slowed his progression just as it has not slowed Wheelchair Kamikazi, Jason DaSilva
or Mitch from Enjoying the Ride. I'm sure that there are many others who have not seen improvement regardless of treatment
and just do not read this site or are severly incapacitated or dead.
I wait and hope for a successful treatment or cure but still maintain my position that not much has changed.
Re: Progress?
i also think ms is far too complex and multifactorial for there ever to be one blanket answer for all.
from my pm conversations with george i am sad to say i had no impression that he was able, given his circumstances, to follow up in an effective way, on any potential strategies i had to offer.
all i can say for sure is that he was megadosing vit d3 daily (at a supposedly safe level), and yet was definitely magnesium deficient (as distinct from low normal) even after supplementing mag daily for a year.
from my pm conversations with george i am sad to say i had no impression that he was able, given his circumstances, to follow up in an effective way, on any potential strategies i had to offer.
all i can say for sure is that he was megadosing vit d3 daily (at a supposedly safe level), and yet was definitely magnesium deficient (as distinct from low normal) even after supplementing mag daily for a year.
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Re: Progress?
Hi,
You have touched on a key issue and, no matter what the stance anyone comes from,it's possible to point to an example that supports that position.
A big issue is how information is shared. We start out as uninformed and vulnerable. As a result, we guess. Sometimes we guess the medical providers know what they're doing and sometimes we guess something we read makes more sense. Truthfully it's all a guess.
It amazes me that neurologists own this area and endocrinologists are barely involved. It amazes me that MRI's are so often portrayed as so critical to diagnosis yet measures of the health of cells and metabolism are ignored.
As I do so well, despite one very aggressive, nearly fatal, attack, I am often queried by chemists about why I keep taking certain things. When I explain it they always say "Oh, yes. We learned that when I was doing my course and I can hard hardly remember it now". When I try to tell my neurologist he puts his hands up and says "I'm just a neurologist." I look healthier than he does these days.
There are a lot of breakthroughs but there are a lot of wheels just spinning and going nowhere. It is difficult for new ideas to be accepted because medical advisors know they are guessing and its far safer for them to stay with the pack. That isn't a new way of behaving. The circulatory system was understood in the 15th Century but that didn't stop doctors from thinking leeches could draw infected blood from an infection in the 19th Century.
Sites like this have value because we can share experiences. I put all mine in one place here http://www.thisisms.com/forum/regimens- ... 24019.html . No one has to read it but it is a story of my ups and downs.
Two things I don't mention are CCSVI and vitamin D because I can't relate to them. What I can relate to are antivirals, things that influence fatigue and things that influence muscle tightness. The more I read, the more I see how they overlap.
I'm not going to thump the table but I do think some things do change. There are many things that cardiologists started looking at in the 1980's that now let them do heart surgery safely that can apply to us. They listened to endocrinologists and looked again at blood circulation and advanced their skills so they didn't guess as much. Neurologists haven't gone that far. That is the pity of it all.
As I was asked to, I wrote some stuff and was filmed. The links to it are here http://www.mstranslate.com.au/ms-many-s ... y-muscles/ . I thought being filmed would help provide a plain English way of telling a lot in 30 minutes but the people who did it just crushed it down into a 3 minute "feel good" clip that tells no one anything. The point is, a lot of people try to say what helps them but getting the message out is hard. There is a lot of noise and a lot of fixed positions in the MS space.
A dead calm sea looks like nothing ever changes until you jump in it.
Regards,
You have touched on a key issue and, no matter what the stance anyone comes from,it's possible to point to an example that supports that position.
A big issue is how information is shared. We start out as uninformed and vulnerable. As a result, we guess. Sometimes we guess the medical providers know what they're doing and sometimes we guess something we read makes more sense. Truthfully it's all a guess.
It amazes me that neurologists own this area and endocrinologists are barely involved. It amazes me that MRI's are so often portrayed as so critical to diagnosis yet measures of the health of cells and metabolism are ignored.
As I do so well, despite one very aggressive, nearly fatal, attack, I am often queried by chemists about why I keep taking certain things. When I explain it they always say "Oh, yes. We learned that when I was doing my course and I can hard hardly remember it now". When I try to tell my neurologist he puts his hands up and says "I'm just a neurologist." I look healthier than he does these days.
There are a lot of breakthroughs but there are a lot of wheels just spinning and going nowhere. It is difficult for new ideas to be accepted because medical advisors know they are guessing and its far safer for them to stay with the pack. That isn't a new way of behaving. The circulatory system was understood in the 15th Century but that didn't stop doctors from thinking leeches could draw infected blood from an infection in the 19th Century.
Sites like this have value because we can share experiences. I put all mine in one place here http://www.thisisms.com/forum/regimens- ... 24019.html . No one has to read it but it is a story of my ups and downs.
Two things I don't mention are CCSVI and vitamin D because I can't relate to them. What I can relate to are antivirals, things that influence fatigue and things that influence muscle tightness. The more I read, the more I see how they overlap.
I'm not going to thump the table but I do think some things do change. There are many things that cardiologists started looking at in the 1980's that now let them do heart surgery safely that can apply to us. They listened to endocrinologists and looked again at blood circulation and advanced their skills so they didn't guess as much. Neurologists haven't gone that far. That is the pity of it all.
As I was asked to, I wrote some stuff and was filmed. The links to it are here http://www.mstranslate.com.au/ms-many-s ... y-muscles/ . I thought being filmed would help provide a plain English way of telling a lot in 30 minutes but the people who did it just crushed it down into a 3 minute "feel good" clip that tells no one anything. The point is, a lot of people try to say what helps them but getting the message out is hard. There is a lot of noise and a lot of fixed positions in the MS space.
A dead calm sea looks like nothing ever changes until you jump in it.
Regards,
Re: Progress?
Glad that I was able to supply an impetus for a really good discussion.
My wishes to all of you for relief and hopefully, less MS.
As for George, it doesn't really matter anymore, does it?
He knew what he did and did not want. What a man...miss him all the time.
My wishes to all of you for relief and hopefully, less MS.
As for George, it doesn't really matter anymore, does it?
He knew what he did and did not want. What a man...miss him all the time.
Re: Progress?
@scott hi can i get clarification re
does that mean the more you read the more you see a) how CCSVI, fatigue and antivirals/fatigue/spasticity overlap? or b) how antivirals, fatigue and spasticity overlap?Two things I don't mention are CCSVI and vitamin D because I can't relate to them. What I can relate to are antivirals, things that influence fatigue and things that influence muscle tightness. The more I read, the more I see how they overlap.
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Re: Progress?
@moom imho, george's story and experience will always matter. then, now, and in future for others who might find themselves in similarly dire straits.
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Re: Progress?
Hi,
JL, it's definitely b)
A book I'm sure you would enjoy is ATP and the heart by Prof Joanne Ingwall. It's a hard read for some but I think you would find it fascinating.
Regards,
JL, it's definitely b)
A book I'm sure you would enjoy is ATP and the heart by Prof Joanne Ingwall. It's a hard read for some but I think you would find it fascinating.
Regards,
Re: Progress?
i am column A for sure 
in my head ATP mostly = Mg-ATP and the Mg piece of the puzzle makes many connections to CCSVI, vit D3, infection, fatigue and spasticity
don't think this will display as an image since it's a png file so, link it is:
https://upload.wikimedia.org/wikibooks/ ... omplex.png
i checked out the book's TOC, looks interesting. for now, would probably read associated articles before committing to an entire book though!
in my head ATP mostly = Mg-ATP and the Mg piece of the puzzle makes many connections to CCSVI, vit D3, infection, fatigue and spasticity
don't think this will display as an image since it's a png file so, link it is:
https://upload.wikimedia.org/wikibooks/ ... omplex.png
i checked out the book's TOC, looks interesting. for now, would probably read associated articles before committing to an entire book though!
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use the report button to flag problematic post content to volunteer moderators' attention.
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Re: Progress?
It's really all about Purine biochemistry. cardiac and skeletal muscle are very similar so there is a read through.
Regards,
Regards,
Re: Progress?
Hi again JL,
The magnesium is important with ATP.
The ATP has four oxygens with a negative charge. The Mg reduces that from -4 to -2 so the ATP becomes less reactive.
The formal version of the reaction is MgATP+H2O → MgADP+Pi+H (someone tell me how to superscript please!!)
The reaction is unidirectional but ATP and ADP are not in chemical equilibrium or there would be no reaction. Binding to Magnesium helps keep the system far from equilibrium and that lets energy keep being released.
Regards,
The magnesium is important with ATP.
The ATP has four oxygens with a negative charge. The Mg reduces that from -4 to -2 so the ATP becomes less reactive.
The formal version of the reaction is MgATP+H2O → MgADP+Pi+H (someone tell me how to superscript please!!)
The reaction is unidirectional but ATP and ADP are not in chemical equilibrium or there would be no reaction. Binding to Magnesium helps keep the system far from equilibrium and that lets energy keep being released.
Regards,