So, When is this madness going to be ended ?

[JerryD]

Hi all,
I'm JerryD and I have had this miserable MS since 2009 . A couple of years ago, I got the Lemtrada infusions. Now, I am just watching and waiting for any new developments in MS treatments. I am now wheelchair dependent and I think and hope that my MS progression has stalled . But my mind continues to torture me with the hopes that there will be a 'cure' before my time is up !

The thought that this disease has been around for hundreds of years and has very few drugs and treatments is frustrating and infuriating . I hope I am not alone with this frustration . When will this madness end ? Charcot, a French pathologist, described this disease for the medical community in the 1850's . The first drugs to be specifically targeted to treat MS showed up in the 1980's or 1990's ! About a hundred and fifty years ! Wow ! When will I be able to walk again ?

These are my frustrations . I have a lot of time sitting in front of the TV, in my EZ chair, and internet browsing .
Anyone, out there, on these boards, have similar thoughts ?

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Jules A]

It is frustrating for sure. I tend to hope for more treatments to stave off progression as well as additional supportive options to make us more mobile and comfortable with whatever progression we have rather than hoping for a cure. The nervous system is so complicated.

When I start feeling down about having MS I remember a girlfriend who died less than 10 years ago at the age of 39 from breast cancer, like how could breast cancer not be treatable in this day and age? That puts things in perspective for me anyway.

Hang in there, JerryD.

[pennstater]

Nice to see you post again JerryD. I do believe one day, there will be a cure. I am hopeful even that the new mRNA technology will be as promising for many diseases as the medical community thinks it may be. Like you, not sure I will see it, but I do believe it will happen.

[oceanpride]

Hello. I seen something on the news the other night about the university of Saskatchewan doing something with something that promoted Mylen but I didn’t catch all of it. I try to not get too excited over this stuff. But I do. We have to keep our hopes up.

[KoKo]

Hello. I seen something on the news the other night about the university of Saskatchewan doing something with something that promoted Mylen but I didn’t catch all of it. I try to not get too excited over this stuff. But I do. We have to keep our hopes up.

Maybe the following article is what you are referring to, oceanpride? I didn't realize that the Canadian province of Saskatchewan has some of the highest rates of MS in the world. So I'm sure that these researchers have great incentive for their research work.

"The research team has modelled the mechanisms by which a specific cell protein, A1, causes damage to nerve cells, expanding on previous USask research that discovered a link between nerve cell damage and the dysfunction of cell protein A1 in the brains of MS patients. The A1 protein is involved in numerous biological processes, including the development and function of neurons (nerve cells).

Saskatchewan has some of the highest MS rates in the world. Multiple sclerosis is a disorder of the central nervous system affecting the ability of the brain and spinal cord to communicate. This results in muscle weakness, a lack of muscle control, problems with vision and other neurological symptoms.

An estimated 3,700 people in the province are living with MS. There is currently no known cure.

“A1 dysfunction in nerve cells causes nerve cell death and damage, also known as ‘neurodegeneration’ in MS patients,” said Dr. Michael Levin (MD), USask College of Medicine professor and Saskatchewan MS Clinical Research Chair in Neurology, who led the project.

“Neurodegeneration is the reason why people with MS continue to get worsening neurologic symptoms, even when they are taking an MS medication.”

By developing knowledge of how the A1 cell protein causes damage to a neuron, the research team hopes to create medications that stop or prevent neurodegenerative processes.

“Our goal is to prevent neurodegeneration, and in doing so, improve the lives of persons living with MS,” said Levin."

Full article:
USask researchers take steps to develop new multiple sclerosis treatments - News - University of Saskatchewan

[oceanpride]

Yes KoKo thanks. I think that might have been it. We have always said they will never find a cure unless they can find the cause. And so far the cause has been all over the place.

[pb909]

Hi JerryD,

I have similar frustrating journey. Diagnosed PPMS in 2009, now wheelchair dependent, and spend a lot of time sitting in front of the TV, in my recliner, and on the computer/internet.

My MS treatments to-date that hopefully have slowed my progression:
Plasmapheresis
Tysabri
Aubagio
Lemtrada
Ocrevus

I'm also hoping for a cure - take care.

[palmtree]

I rarely think about a cure but your posts make me realize they haven’t really tried.

Since there are people with mild cases, the medical community never takes MS seriously. I just got out of the hospital and they always think my symptoms are from some medication.

‘What medication can we take away that will fix this?’ Ugh!

We need a lobbyist even though I don’t like them.

Maybe this will take a group effort of writing to every medical school in the country. (and a few pharmaceutical companies. It may mean boycotts until they make an effort)

They are making so much money it’s going to take a lot of pressure to get them to change their ways.

[Pistachio]

Maybe the following article is what you are referring to, oceanpride? I didn't realize that the Canadian province of Saskatchewan has some of the highest rates of MS in the world. So I'm sure that these researchers have great incentive for their research work.

Yep! Canada actually has THE highest rates, per capita,of MS in the world. It's not something we Canucks brag about.

But, seriously, Jerry D, I'm sorry you're feeling this way. You're right - it's not fair and it's equally surprising that there are not more answers at this point in time.

[Mamabug]

...

The thought that this disease has been around for hundreds of years and has very few drugs and treatments is frustrating and infuriating . I hope I am not alone with this frustration . When will this madness end ? Charcot, a French pathologist, described this disease for the medical community in the 1850's . The first drugs to be specifically targeted to treat MS showed up in the 1980's or 1990's ! About a hundred and fifty years ! Wow ! When will I be able to walk again ?

These are my frustrations . ...

I am also frustrated by lack of progress towards finding a cure. My usual thought about that is that drug companies are not motivated to cure something, when treating it, indefinitely, with meds that produce expensive profits remains lucrative.

Regarding Saskatchewan, I grew up there. I'm one of their many cases.