MS SUCKS and it is time our Government KNOWS IT!!

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.
robbie
Family Elder
Posts: 1285
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: MS SUCKS

Post by robbie » Sun Jun 16, 2019 2:04 pm

bromley wrote:
Thu Nov 03, 2005 2:10 pm
Kim,

I understand you 100%.

My neuro decribes my symptoms as 'mild' at the moment but it's all relative.

Apart from ALS (and a few very rare diseases) this is your worst nightmare. You can imagine the conversation that went on when the bastards thought this one up - "let's make a disease that takes away someones ability to walk, might as well affect their bowell and bladder, add some tremors, some cognitive dysfunction, add some blindness, speech impairment, make sure they can't have a long life and enjoy a retirement, come along when they are at university / starting a job, having a family..."

And even if you don't get all of these (which are all major illnesses in their own right) you have to live with the fear of getting them.

And given that it's so destructive might as well make sure that the experts e.g. neurologists haven't got a clue what's going on.

I told my wife when I was dx that I wish it had been cancer - I still stand by this. Cancer either kills you or you survive it. You never get over MS - it just slowly eats you away.

I've never read such a pack of lies as you get on the MS websites - 'MS doesn't kill' - they never mention Jacqueline de Pre who died at 42, J K Rowling's (Harry Potter author) mother who died at 45. Look at the state of Richard Pryor - slumped in a wheelchair and has lost his speech.

Most of the websites claim that most people with MS have near normal lives most ofthe time. Yeah - but quadraplegic doesn't fit my description of normal.

You sometimes see the term benign MS - most MS nurses I've spoken to say this is a misnomer.

The thing that really haunts me is that the chances of me getting this disease were 1000:1. But my children's chances are 50:1.

One of the neuros I met said that I wasn't taking the diagnosis well. Was I supposed to be smiling knowing that I have a disease that is slowly destroying my central nervous system? Really looking forward to the walking frame and the electric buggie - my kid's will be so proud of me.

And to top it all they create something called the EDSS which shows you how you are progressing (regressing!). I'm fairly low on the scale at the moment but by about six you're in a pretty bad way. Nine is bedbound and ten is dead (but remember they told us that MS doesn't kill you!). I approach this game like Monopoly - once I pass six I'll go straight to ten. They are debating a right to die law in the UK Parliament at the moment. As usual the Roman Catholics are against it claiming that life is God given. I'll be happy to pass my God given MS to a Catholic.

I totally concur with your views on Government funding. Aids is preventable - abstain or use a condom / use new needles if taking drugs. The UK Gov spends hundreds of millions on anti-smoking, anti-drugs, anti-alcohol programmes - but people have a choice about these. We have no choice with MS yet it wrecks our lives and the lives of our families. But the help from Gov is pathetic - until we become so disabled that they have to intervene.

Apologies for the huge rant Kim but I think your views (and some of mine) are shared with others with this disease.

A cure is always around the corner, better treatments are just a few years away. Unfortunatlely this is beginning to sound like a broken record. I imagine in ten year's time they will still be playing this record.

A British comedy called Dad's Army had a character whose catchphrase was 'we're doomed, we're doomed'. In terms of MS he's right. I get much more peace of mind knowing this, rather than pinning my hope on some treatment that we'll never come through.

Bromley
Some older posts are good this was from the heart .
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

User avatar
NHE
Volunteer Moderator
Posts: 5284
Joined: Sat Nov 20, 2004 3:00 pm
Contact:

Re: MS SUCKS

Post by NHE » Sun Jun 16, 2019 6:59 pm

robbie wrote:
Sun Jun 16, 2019 2:04 pm
Some older posts are good this was from the heart .
Nearly 14 years old and Bromley's post could have been written last week...

81Charger
Family Elder
Posts: 108
Joined: Tue Nov 24, 2009 3:00 pm
Location: New Brunswick, Canada

Re: MS SUCKS and it is time our Government KNOWS IT!!

Post by 81Charger » Mon Jun 17, 2019 6:08 am

Very true!

ElliotB
Family Elder
Posts: 1929
Joined: Mon Feb 03, 2014 4:08 pm

Re: MS SUCKS and it is time our Government KNOWS IT!!

Post by ElliotB » Mon Jun 17, 2019 7:43 am

"Nearly 14 years old and Bromley's post could have been written last week..."

While this thread goes back many years, frankly it appears nothing has changed that I know of since my dad was diagnosed about 50 years ago. He could have written the same letter back then... And perhaps we could go back another 50 years and make the same claim, who knows?

So perhaps I have a slightly different perspective on the disease and what it can do and ultimately when I was diagnosed and realized nothing had really changed from what my dad had to deal with. It certainly was not pleasant for him or anyone who was around him. I knew I had to take matters into my own hands. I realized very quickly that waiting for a cure, especially a magic pill or a simple treatment, was a total waste of time. It just wasn't going to happen. Which is why I took matters into my own hands and have taken extreme measures based on the vast amount of information available thanks to the web. There are viable unproven treatment options that may work but you have to look for them and be willing to work hard on your health to get any results, IF you get any results - there is no guarantee. And yes, people who know me think I am nuts! BUT so far so good...

I think for the majority of people, the waiting game for a cure is the 'norm'. I am truly hopeful that a cure will be found very, very soon, but smart enough/realistic enough to know it is likely not going to happen in my lifetime nor in the lifetime of anyone currently participating on this form.

vesta
Family Elder
Posts: 620
Joined: Thu Jul 12, 2012 9:10 am
Location: Paris, France
Contact:

Re: MS SUCKS and it is time our Government KNOWS IT!!

Post by vesta » Tue Jun 18, 2019 1:53 am

ElliotB wrote:
Mon Jun 17, 2019 7:43 am
"Nearly 14 years old and Bromley's post could have been written last week..."

While this thread goes back many years, frankly it appears nothing has changed that I know of since my dad was diagnosed about 50 years ago. He could have written the same letter back then... And perhaps we could go back another 50 years and make the same claim, who knows?

So perhaps I have a slightly different perspective on the disease and what it can do and ultimately when I was diagnosed and realized nothing had really changed from what my dad had to deal with. It certainly was not pleasant for him or anyone who was around him. I knew I had to take matters into my own hands. I realized very quickly that waiting for a cure, especially a magic pill or a simple treatment, was a total waste of time. It just wasn't going to happen. Which is why I took matters into my own hands and have taken extreme measures based on the vast amount of information available thanks to the web. There are viable unproven treatment options that may work but you have to look for them and be willing to work hard on your health to get any results, IF you get any results - there is no guarantee. And yes, people who know me think I am nuts! BUT so far so good...

I think for the majority of people, the waiting game for a cure is the 'norm'. I am truly hopeful that a cure will be found very, very soon, but smart enough/realistic enough to know it is likely not going to happen in my lifetime nor in the lifetime of anyone currently participating on this form.
Greetings:

I absolutely disagree that "nothing has changed". Professor Zamboni opened the door to treatment of the Central Nervous System's fluid circulation obstructions (in his thinking CCSVI venous blood circulation). Yes, the problem is more complicated than his particular focus. For instance, it's not necessarily obstructed venous blood circulation at issue. For some the primary problem resides in obstructed CSF in the spine. If one assumes a drug will "cure" MS, THAT will never happen. It's like looking for a drug to treat a broken leg. First set the leg, than work to facilitate healing. For those who prefer the bio-chemical approach to the exclusion of all else, suit yourself. But leave the door open to those who want to live better with MS.

Best regards, Vesta

ElliotB
Family Elder
Posts: 1929
Joined: Mon Feb 03, 2014 4:08 pm

Re: MS SUCKS and it is time our Government KNOWS IT!!

Post by ElliotB » Tue Jun 18, 2019 9:57 am

Actually, the reality is that nothing has changed. Like others before and after Zamboni, the claim of a cure for MS has been made over and over again by many, many people - Swank may have been the first and possibly the most famous and that was about 50 years ago. And yet, there is no conclusive evidence that his diet works, REALLY works, or is any better than nothing at all. Or that any of the cures work.

As with EVERYONE who claims to have a cure, each protocols seem to work for some but not all. With a disease where the majority of those diagnosed have milder rather than advanced courses of the disease, it is an almost impossible task to know exactly what is going on. There is no conclusive evidence that any single one of the numerous 'cures' currently out there is a TRUE cure that really works and works for the majority of those that try it.

We just have to keep hoping and trying...
Last edited by ElliotB on Tue Jun 18, 2019 11:00 am, edited 2 times in total.

Post Reply
  • Similar Topics
    Replies
    Views
    Last post