Love your show. I was diagnosed with MS about 11 years ago. 61 years old now and still working full time. My plan to extend the quality of my life as long as possible is to continue working as long as I can. It keeps me both physically and mentally engaged. I recently saw an article about the oldest living Dr in the US. He a Neurologist and is about 100 years old. The one thing he said that really stuck with me was "The enemy of longevity is retirement".
You are so right i recently read about a gentle man who turned 88 yrs has had ms since in his 20s has outlived most of his friends who seemed healthy said the samething you said.
I appreciate the frank, authentic sharing. I am very private about my MS. I suppose it is a combination of pride, not wanting to burden people and a lifelong personality trait of being optimistic. I find myself wondering why people do not ask, I mean really ask me how I am. It is a delicate balance to be self-reliant and still find somewhere to unfold my sadness that exists in a real way. Anyhow I needed to hear this today. Thanks
Thank you for this candid, important conversation. I appreciate your proactive, empowering approach, as well as your humor. I've had MS for over 11 years and this is the first time I've heard that 75% statistic. Thank you for talking about the atrocity that is "MAID," especially. I would welcome an episode (or more) on the eugenical subject.
My wife is an RN and retired cop (very matter of fact). She has said that I'm probably going to die of aspiration pneumonia, aspiration or head injury. She's probably right. Oh well
For far too long pharma has been too much in control of "controlling MS". We have a choice of MS immune system modifiers or MS immune system suppressants. If you have a "wonky" immune system, like some of us do, neither of these options are tenable. The point of the matter is MS is a disease causes by your immune system attacking myelin. Now pretty well all autoimmune diseases have something attacking something whether it be myelin, connective tissue, or even organs. There is a huge quandary for those of us who have immune sensitivities. A lot of us can develop histamine intolerance, for example because the medications are just the last straw the body can handle. I wish that more money was put towards autoimmune diseases and they were put under one umbrella, like for example cancers. There is a lot of funding going towards cancer, but because for some reason or another autoimmune diseases get split up between specialists like neurologists and rhematologists. Lupus, MS, Scleroderma, CIDP, SPS, rheumatoid arthritis, etc. all are caused by our mis-firing immune systems. Our T or B immune cells are attacking us. All of these autoimmune diseases should be put under one umbrella and get far more funding for a dead stop to progression, or even towards reversal of the degeneration that is often soft talked about. A selling point is that even though it may be costly and take a 2 or 3 week hospital stay - the money saved by the government, and/or by medical plan health insurers would be astronomical in comparison. People with MS cost well over a million dollars in MS medications alone. If the MS is arrested then there is no need for the thousands of dollars every year for MS medications. Pharma could even have a fresh direction and stake in this because instead of targetting modifying or suppressing immune systems they could be finding for MS eg. myelin repairing medications. This goes for connective tissue, organ issued other immune disorders as well. For small cell vasculitis, an autoimmune disease, in North America, you can get cyclophosphamide chemo (protecting your own kidneys with medication MESNA) then you get your own stem cells returned to you. The get these stem cells via apheresis the same procedure one gets should they need to have kidney dialysis. These stem cells can be cryo-stored. If the chemo is stopped before it "ablates" the bone marrow you can almost get away with simply getting enough Neupogen to get your immune system to regrow. The blood stem cells when they enter your bloodstream simply grow new "antigen-naive" white bloods cells. They no longer attack the body and are now functioning as they should. Hematologists can obtain them from your bone marrow by giving you Neupogen which causes the stem cells to go out into your blood. They are separated from your blood. However the magic with your own stem cell blood cells is that they do not have anything telling them to attack your myelin, or your joints, organs, whatever. We will never arrest this horrendous disease, and all the other degenerative autoimmune diseases, if we don't take action to stop the degeneration. Simply "reducing the exacerbations" by medication in this day and age is simply not good enough for people with autoimmune disease. We all deserve better. BTW the cyclophosphamide chemo, with the own stem cell extraction and storage, (but not going as far as ablating or destroying the bone marrow) has been used in North America since the 1950s, for diseases like lymphoma and other cancers, and used on patients up to 70 years old and sometimes more than once (recurring cancer). Additionally it has been allowed in North America, as a recognized treatment for small cell vasculitis. However, magically it is not recognized for other autoimmune diseases such as MS. It truly is not fair. Medical societies have played us by only having small "extreme by destroying the bone marrow" clincial trial HSCT which goes further and ablates the bone marrow, which 100% is not necessary because immune stem cells are antigen naive and are immature and neutral. With non-ablative, autologous (meaning our own stem cells) When we wipe out the established immune system and have new bone marrow stem cells regrow, they do not misfire. It is like an organic computer reboot. The risks. There is a small period of time where one undergoing this procedure should be in a sterile room, and have no interaction other than doctors routinely checking, and nurses. The patient should ring for help should they not feel well. There are lots of medications should one contract a virus, bacterial infection, or fungal infection during the short period of time that your immune system needs to crash before they reinfuse your own stem cells. No painful extraction for those as they are extracted via apheresis prior the chemo and topped up after the body crashes with more Neupogen. They can give you gravol, antihistamines, steroids, MESNA to protect your kidneys, while you are undergoing chemo. I only felt tired during the procedure, nothing more. I had to travel to Pirogov Hospital in Russia for HSCT in 2017. (details hsct-russia.com/ ) There is also Clinica Ruiz , a highly regarded hospital in Mexico as well ( www.hsctmexico.com/ ) USA used to have this procedure if you bought it from cancer clinics and Chicago Northwestern University had it for a while. It seems to be that pharma has a chokehold on most of the medical world when it comes to autoimmune diseases like MS. My MS progression has stabilized. I had no choice but to have HSCT and go into debt to get it, but I had developed histamine intolerance and could not withstand any of the medications - Copaxone, Tecfidera, etc. There were just too many side effects. I had to jump far above regular specialists and get in touch with prominent autoimmune medical professors (from CAAIF) (from CSACI) and from (AAAAI) and because nothing was working. It was serious too, with chronic urticaria and angio-edema trips to the ER hospital as well as developing chronic histamine mast cell disorder. My MS is stabilized now after HSCT. My only wish is that dIdn't go 10 years sooner. What is even more scary is that a lot of medications are MABs now which means monoclonal antibodies. If you become immune sensitized with these medications it takes a long time for them to be flushed from your system.
They aren't sure yet why- and it isn't completely due to steroid use for most of us- we are just more prone to osteo issues- could be that our calcium receptors are affected- I question that also with Vitamin D- So women should request Dexa scans before you'd think you should. I did and my neuro signed off on it and I had osteo penia at 58 even though when Dx at 40 my bone density was great. I grew up on a farm doing a lot of weight bearing and then got into weight lifting in high school and continued that interest and life style. My nick name in high school was actually Schwarzenegger ;-0 Summary- women with MS should request tests early to see if you are entering into per-menopause early-as many of us do- have a dexa scan as many of us will test osteopenia and need calcium supplements- we should consider HRT as the start of menopause is another time in our MS timeline for increased progression- PIRA actually- so it is a time to watch closely, consider DMT changes, etc. At this point my MRI changes started to switch to brain volume loss which is kicking off cognitive changes. This started at 58, 18 years after DX while on Ocrevus. I have switched to Aubagio which scores better for brain volume loss th-cam.com/video/jgvLyTzA7W4/w-d-xo.html
Love your show. I was diagnosed with MS about 11 years ago. 61 years old now and still working full time. My plan to extend the quality of my life as long as possible is to continue working as long as I can. It keeps me both physically and mentally engaged. I recently saw an article about the oldest living Dr in the US. He a Neurologist and is about 100 years old. The one thing he said that really stuck with me was "The enemy of longevity is retirement".
Totally get this. I would argue that the enemy of longevity is lack of purpose. If you retire you need a reinvention plan.
You are so right i recently read about a gentle man who turned 88 yrs has had ms since in his 20s has outlived most of his friends who seemed healthy said the samething you said.
I appreciate the frank, authentic sharing. I am very private about my MS. I suppose it is a combination of pride, not wanting to burden people and a lifelong personality trait of being optimistic. I find myself wondering why people do not ask, I mean really ask me how I am. It is a delicate balance to be self-reliant and still find somewhere to unfold my sadness that exists in a real way. Anyhow I needed to hear this today. Thanks
Same here, very private about my ms and the people who know, don't ever really ask how I am .
Very strange
Thanks for covering topic, this disease takes so much from all of us. My kids are tired of me complaining of all symptoms.
Try not to complain to your childrenkids need a strong ,protective parent
Thank you for this candid, important conversation. I appreciate your proactive, empowering approach, as well as your humor. I've had MS for over 11 years and this is the first time I've heard that 75% statistic.
Thank you for talking about the atrocity that is "MAID," especially. I would welcome an episode (or more) on the eugenical subject.
You die from the treatments
They cause other comorbities.DMT is a risk
Words of wisdom
It can be risky, but with good medical care and monitoring, taking a DMT can be a very good option for many people.
Great episode, well done guys 👏👍🏻😍
Thank you for this.
I just got diagnosed at age 68. I hate this disease
My wife is an RN and retired cop (very matter of fact). She has said that I'm probably going to die of aspiration pneumonia, aspiration or head injury. She's probably right. Oh well
Btw, I refuse to thicken my wine
@@jeffscott1006 😆cheers!
Great (tough) topic. I think alcoholism is one of the other contributing factors to the 7 year gap?
@@markwebbdoesms2271 Interesting observation, Mark. The research on this is surprisingly limited, but it certainly makes sense.
Since I started tx. in Feb 23. Very little improvement had 2 UTI's at my age 68 and just starting it is overwhelming
Of course it's overwhelming. You are in the right place. Finding others with MS really helps.
There are many other situations to consider : Hx of heart disease, diabetes, liver problems, cancer, etc.Lots of things not associated with MS.
Love this! What a great channel, and an amazing space to talk about MS!
I would love to collaborate some how, if you would be interested?
For far too long pharma has been too much in control of "controlling MS". We have a choice of MS immune system modifiers or MS immune system suppressants. If you have a "wonky" immune system, like some of us do, neither of these options are tenable. The point of the matter is MS is a disease causes by your immune system attacking myelin. Now pretty well all autoimmune diseases have something attacking something whether it be myelin, connective tissue, or even organs.
There is a huge quandary for those of us who have immune sensitivities. A lot of us can develop histamine intolerance, for example because the medications are just the last straw the body can handle.
I wish that more money was put towards autoimmune diseases and they were put under one umbrella, like for example cancers. There is a lot of funding going towards cancer, but because for some reason or another autoimmune diseases get split up between specialists like neurologists and rhematologists. Lupus, MS, Scleroderma, CIDP, SPS, rheumatoid arthritis, etc. all are caused by our mis-firing immune systems. Our T or B immune cells are attacking us. All of these autoimmune diseases should be put under one umbrella and get far more funding for a dead stop to progression, or even towards reversal of the degeneration that is often soft talked about.
A selling point is that even though it may be costly and take a 2 or 3 week hospital stay - the money saved by the government, and/or by medical plan health insurers would be astronomical in comparison. People with MS cost well over a million dollars in MS medications alone. If the MS is arrested then there is no need for the thousands of dollars every year for MS medications.
Pharma could even have a fresh direction and stake in this because instead of targetting modifying or suppressing immune systems they could be finding for MS eg. myelin repairing medications. This goes for connective tissue, organ issued other immune disorders as well.
For small cell vasculitis, an autoimmune disease, in North America, you can get cyclophosphamide chemo (protecting your own kidneys with medication MESNA) then you get your own stem cells returned to you. The get these stem cells via apheresis the same procedure one gets should they need to have kidney dialysis. These stem cells can be cryo-stored. If the chemo is stopped before it "ablates" the bone marrow you can almost get away with simply getting enough Neupogen to get your immune system to regrow. The blood stem cells when they enter your bloodstream simply grow new "antigen-naive" white bloods cells. They no longer attack the body and are now functioning as they should. Hematologists can obtain them from your bone marrow by giving you Neupogen which causes the stem cells to go out into your blood. They are separated from your blood. However the magic with your own stem cell blood cells is that they do not have anything telling them to attack your myelin, or your joints, organs, whatever.
We will never arrest this horrendous disease, and all the other degenerative autoimmune diseases, if we don't take action to stop the degeneration. Simply "reducing the exacerbations" by medication in this day and age is simply not good enough for people with autoimmune disease. We all deserve better.
BTW the cyclophosphamide chemo, with the own stem cell extraction and storage, (but not going as far as ablating or destroying the bone marrow) has been used in North America since the 1950s, for diseases like lymphoma and other cancers, and used on patients up to 70 years old and sometimes more than once (recurring cancer). Additionally it has been allowed in North America, as a recognized treatment for small cell vasculitis. However, magically it is not recognized for other autoimmune diseases such as MS. It truly is not fair. Medical societies have played us by only having small "extreme by destroying the bone marrow" clincial trial HSCT which goes further and ablates the bone marrow, which 100% is not necessary because immune stem cells are antigen naive and are immature and neutral.
With non-ablative, autologous (meaning our own stem cells) When we wipe out the established immune system and have new bone marrow stem cells regrow, they do not misfire. It is like an organic computer reboot.
The risks. There is a small period of time where one undergoing this procedure should be in a sterile room, and have no interaction other than doctors routinely checking, and nurses. The patient should ring for help should they not feel well. There are lots of medications should one contract a virus, bacterial infection, or fungal infection during the short period of time that your immune system needs to crash before they reinfuse your own stem cells. No painful extraction for those as they are extracted via apheresis prior the chemo and topped up after the body crashes with more Neupogen. They can give you gravol, antihistamines, steroids, MESNA to protect your kidneys, while you are undergoing chemo. I only felt tired during the procedure, nothing more.
I had to travel to Pirogov Hospital in Russia for HSCT in 2017. (details hsct-russia.com/ ) There is also Clinica Ruiz , a highly regarded hospital in Mexico as well ( www.hsctmexico.com/ ) USA used to have this procedure if you bought it from cancer clinics and Chicago Northwestern University had it for a while. It seems to be that pharma has a chokehold on most of the medical world when it comes to autoimmune diseases like MS.
My MS progression has stabilized. I had no choice but to have HSCT and go into debt to get it, but I had developed histamine intolerance and could not withstand any of the medications - Copaxone, Tecfidera, etc. There were just too many side effects. I had to jump far above regular specialists and get in touch with prominent autoimmune medical professors (from CAAIF) (from CSACI) and from (AAAAI) and because nothing was working. It was serious too, with chronic urticaria and angio-edema trips to the ER hospital as well as developing chronic histamine mast cell disorder. My MS is stabilized now after HSCT. My only wish is that dIdn't go 10 years sooner. What is even more scary is that a lot of medications are MABs now which means monoclonal antibodies. If you become immune sensitized with these medications it takes a long time for them to be flushed from your system.
Isn't the stem cell replacement now offered in the US?
Forgot to add "Thank you." 😊
They aren't sure yet why- and it isn't completely due to steroid use for most of us- we are just more prone to osteo issues- could be that our calcium receptors are affected- I question that also with Vitamin D- So women should request Dexa scans before you'd think you should. I did and my neuro signed off on it and I had osteo penia at 58 even though when Dx at 40 my bone density was great. I grew up on a farm doing a lot of weight bearing and then got into weight lifting in high school and continued that interest and life style. My nick name in high school was actually Schwarzenegger ;-0
Summary- women with MS should request tests early to see if you are entering into per-menopause early-as many of us do- have a dexa scan as many of us will test osteopenia and need calcium supplements- we should consider HRT as the start of menopause is another time in our MS timeline for increased progression- PIRA actually- so it is a time to watch closely, consider DMT changes, etc. At this point my MRI changes started to switch to brain volume loss which is kicking off cognitive changes. This started at 58, 18 years after DX while on Ocrevus. I have switched to Aubagio which scores better for brain volume loss
th-cam.com/video/jgvLyTzA7W4/w-d-xo.html