Bromley in a bad mood

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Bromley in a bad mood

Postby bromley » Fri Oct 07, 2005 2:17 am

One of the MS sites I check for info on new findings / treatments has a search engine which picks up references to MS in the world's newspapers (English speaking). Everyday there is an obituary but today three deaths were reported. The individuals were all in their 50s. It sort of hits home that despite the 'its not a death sentence', 'a near normal life span' etc that you see on the National websites - things might not be as rosy as they make out. A new user posted yesterday and mentioned that she saw her aunt 'eaten alive' by a nasty form of PPMS. What wound me up this morning was the news (excellent news) that a vaccine for cervical cancer would be available next year and had proved 100% effective in trials. Cancer of any sort is a dreadful disease, but research and funding are driven by the need to save lives e.g. breast cancer kills XXX a year. MS is a sort of cinderella disease - it doesn't affect as many people as say lung cancer - but there are estimated to be 2.5 million sufferers in the world so its not rare. It is also not portrayed as a disease which kill, but in all honesty it does. Although reference is made to secondary complications etc it's the MS which does it. I have no solution to this, and hopefully future treatments might change things. But perhaps the MS societies around the world might advertise the fact that this disease is a killer of young / youngish people (Jacqueline de Pre as classic example). And that the lead up to the end can be pretty awful (Richard Pryor). It's not about pins and needles and smiley people in electric wheelchairs. If this message could be put across then real breakthough treatments funded by Gov / drugs industry might be delivered as is happening in the world of cancer and heart disease.

Sorry if this comes across as a bit depressive but the ACTRIMS / ECTRIMS conference really showed up the useless MS researchers.

Bromley

http://c.moreover.com/click/here.pl?j402586088&w=464753

http://c.moreover.com/click/here.pl?j402494588&w=464753

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Postby LifeontheIce » Fri Oct 07, 2005 5:26 am

It is very depressing, Bromley. MS kills slowly, humiliates, changes personality, and causes total distrust in one's body and mind.
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Re: Bromley in a bad mood

Postby HarryZ » Fri Oct 07, 2005 6:07 am

Bromley,

Like most MS patients realize, this disease slices you a piece at a time, slowly removing your quality of life as it progresses. I've watched it do this with my wife for over 30 years and it is not nice to look at!

Your comment after attending the recent MS research conference is quite accurate with reference to what has been accomplished over the decades. As Dr. P. O. Behan wrote in his Pathogenesis of MS....the progress of MS research over the past 40 years has been "abysmal". How can one argue with him when you look at what has been accomplished with other diseases?

The current world of MS research is still fixated with giving patients stronger and more potent immune system altering drugs...CRAB's, Tysabri, Novantrone etc....and where are we...no cause, certainly not even close to a cure and minimal effect on the progression of the disease! The researchers still don't even have a conclusive test for MS which leaves thousands in limbo for many years. So when you look at the word "abysmal" describing MS research, it's difficult to argue against it.

Harry
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Postby Melody » Fri Oct 07, 2005 6:21 am

Bromely we try to concentrate on what we ourselves can do rather than to hang onto the hopes of a miracle drug. Hubby was not pleased when he was dragging a leg at 41 nor was he happy that he couldn't stay awake for more than a few hours at a time. That was just one year ago.As to getting depressed about it he did try that so I dragged him to every meeting and group available until he realized he didn't want to wear the face of what he saw in some to be MS. He wanted to wear the face of the other half of MS'ers. The face with the look that says hey I can control lots of what is happening if I just make it something I have to do. Now he had the choice to keep dragging around or he could decide to follow a strict diet as well as supplement regime. He has chosen the last and no longer drags and has hope that we will keep it under control. Ms is likely caused by different things in each person. So first thing is to know YOUR OWN BODY inside out. Put all your energy into that and in 6 months you will see changes. My opinion by what I've witnessed at self help as well as by talking to other's we have met with MS. That means don't let me see you bemoaning your lot in life with a cig hanging out of your mouth or a diet pop in your hand. Give it 200% and the returns can be awesome. Cheer up please we need you around with your wisdom. :wink:
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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Postby HarryZ » Fri Oct 07, 2005 6:47 am

Melody,

I'm not going to disagree with anything you have written since a positive mental outlook in fighting MS is extremely important.

But if one were to turn the clock 15 years ahead in your situation and pro-rate the progression of the disease (in reality, impossible to predict what the MS could do in this time) I think you and your husband might have a slightly different perspective of the situation.

I can honestly say that Marg and I experienced your current situation back in our early 40's.....and back then, we were being told that a cure is "just around the corner"! Sure has been a "big" corner!

Take care.

Harry
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Postby bromley » Fri Oct 07, 2005 7:52 am

LifeontheIce said:

It is very depressing, Bromley. MS kills slowly, humiliates, changes personality, and causes total distrust in one's body and mind.


Life,

We must be on exactly the same wavelength. These sites offer hope, through highlighting new treatments etc, and a good place to discuss experiences, but it's also an opportunity for a reality check. When I first met my MS nurse I asked whether it would be useful to go to my local MS society meeting - knowing that I was a sports mad active man with a very young family she said it might be best not to. The real killer for me is that my young children won't ever know the real me - active, happy, enthusiastic etc. My father came out with the classic line - 'you have to deal with the cards life deals you'. Easy to say if your 70 and have seen your kids grow up, and enjoying a retirement after 45 years of working.

This is beginning to sound like a sob story but, with a few exceptions, this vile disease is unique - physical damage, mental damage, life shortening etc etc. Unlike many individuals we know our future - or can have a good stab at it. Unlike other diseases you never get better and worsening is guaranteed. A report in the UK last week said that men who are 65 have a good chance of making it to 90. Good for them!

I have to agree with Harry that the drive for more and more powerful drugs that suppress the immune system are unlikely to be the answer. The one good neuro I saw said that a disease is auto-immune until the virus [or bacteria] is found. Every MS researcher should be pulled off their pet project and identify the cause / causes (as happened with stomach ulcers and some cancers). The once identified we could move forward in a sensible way. Paying researchers to look at the effectiveness of copaxone + chewing gum + garlic has proved a waste of time. The societies keep telling us that there are now disease modifying drugs. Really? What about SP or PP ms? In what ways do they 'modify' the disease? Do they stop sufferers going from RR to SP? I've seen no evidence. 'Modify' in this context means that make you feel that you are getting some treatment (even though pretty ineffective) rather than halting or significantly delaying the progress of the disease!

This has not been a good year for MS research despite the positive spin of the national societies. My bad mood has also been influenced by the NMSS website which has a picture of a toilet with handrails etc etc. Nice reminder to those with bladder and bowel problems.

To walk, to work, to play, to see, to make love. Fairly basic requirements. But MS manages to impact on all / some of these.

Perhaps I'm the only one who has these fears / view of this disease? But I don't believe I am.

Perhaps tomorrow we will get some good news (like the cervical cancer vaccine announced today)!

Sorry to vent today - but we're all entitled to an occassional off day.

Postive posts will resume in due course.

Bromley
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Postby OddDuck » Fri Oct 07, 2005 8:10 am

Hi, folks!

Bromley...............I'm off work for a few days, so you know me..........I got into researching again! I'm going to post in another thread just a little something I found.

Shoot........I don't know. Maybe what I post can be viewed as good news, or maybe not. :?

Deb
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MS and Cancer

Postby Brownsfan » Fri Oct 07, 2005 1:09 pm

The difference between MS and Cancer is that MS is a long-term, chronic, and often progressive condition which requires a lifetime of medication. You really think the drug companies want to find a cure and lose that revenue stream? We are customers, not patients. I have accepted the fact that I will need to heal myself because the medical community isn't interested.
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Postby bromley » Fri Oct 07, 2005 1:26 pm

Your 100% right Brownsfan.

I always find it odd that the four injectibles all deliver c.30% reduction in relapses.

This disease is a researcher's / drugs company's / neurologist's dream ticket. A real cash cow.

If reincarnation turns out to be true I hope they all come back as mice and find themselves in a Biogen laboratory!

Bromley
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Postby Melody » Fri Oct 07, 2005 2:27 pm

Actually guys who you should be sending these concerns to is Montel Williams he has Ms and he is looking for a cure. He gets things done he is a talk show host big time over here.

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John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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Re: MS and Cancer

Postby kitkat2 » Fri Oct 07, 2005 4:22 pm

Brownsfan wrote:The difference between MS and Cancer is that MS is a long-term, chronic, and often progressive condition which requires a lifetime of medication. You really think the drug companies want to find a cure and lose that revenue stream? We are customers, not patients. I have accepted the fact that I will need to heal myself because the medical community isn't interested.



**********
Y'know? For the past 3 yrs, since ms dx, I have been trying to convince myself that the above^^ cannot be true, but there, you've said, and now here 3 yrs later I cannot refute it.... :cry:

Bromley, I like your "mice" idea. I giggled when I read it.
I haven't giggled in a long time.

Thankyou.

Kitkat2 :)
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Postby HarryZ » Sat Oct 08, 2005 5:53 am

Bromley,

If reincarnation turns out to be true I hope they all come back as mice and find themselves in a Biogen laboratory!

Bromley


I don't think that I would wish that on anyone...unless of course you were allowed to purchase stock in Biogen and then given a tip to sell it for big-time profit before they pulled another drug off the shelf :P

Harry
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Postby OddDuck » Sat Oct 08, 2005 6:00 am

Harry,

Well, Biogen is about to go at it again, too. The drug to "watch out" for is daclizumab.

Watch that one go down the same path as Tysabri! I'll put my warnings out there now! :?

Deb
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Postby Jaded » Sat Oct 08, 2005 6:29 am

Hello Bromley

You are allowed down days. We all are. It's all very well being positive but sometimes thinking about MS certainly gets me down, as I am sure it does each of us. I certainly try not to think too much about how much worse things might be in 5 years...:cry:

But at least we have each other. Before the internet, all MS'ers must have felt isolated....

We do have lots of potential cures around the corner - however big that corner is the most important thing I think is to have hope, and keep going with looking after ourselves as best we can.

Jaded
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Postby HarryZ » Sat Oct 08, 2005 8:43 am

Deb,

Well, Biogen is about to go at it again, too. The drug to "watch out" for is daclizumab.


A friend of ours here in London, ON was approached my the MS Clinic and asked if she wanted to take part in a daclizumab clinical trial. They were only going to have 5 patients participate (out of the 6,000 registered patients at this clinic) so it looks like a Phase II trial.

I didn't say too much to her about it because she was leaning towards not being another guinea pig!

I can imagine the millions and millions that will spent on trailing this drug on yet another attempt to severely alter the patients' immune system in an attempt to find something that works. I suppose these patients will be monitored far more carefully after what happened with Tysabri.

Take care.

Harry
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