Lies, damn lies and statistics

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Lies, damn lies and statistics

Postby bromley » Mon Nov 01, 2004 3:16 pm

Dear all,

Having this disease is a nightmare, but almost as bad (but not quite) is the quality of the information / data on this disease. Let me give a few examples:

- Many websites (e.g. of national societies) often say that by ten years after dx, 50% of RR ms sufferers move to Secondary Progressive (should this be regressive -progressive sounds like improvement?). On first reading, I assumed that the other 50% always stay at RR, but no, on further research pretty much all RR sufferers turn to SP eventually! Why don't they just say this instead of giving false hope?

- Some of the websites I have looked at say that cognitive / memory problems are rare (I've seen c.5% used). But others say that 50% of sufferers will experience cognitive / memory problems!

- Life expectancy (not a pleasant subject) - my neuro told me that my ms shouldn't affect my life expectancy. Some websites say 90-95% of normal life expectancy. Others talk about years after dx (I've seen these range from 25-40 years). Surely, there's enough data out here? Has anyone with ms made it to 100?

- Most websites say that everyone with ms is different (different symptoms etc). However, I've also read that by 10 years after dx, 90% of ms sufferers will have bladder / bowel problems. This sounds like we are all very similar?

- We've all seen the various data pumped out by the CRAB manufacturers and how this needs to be interpreted very carefully (no need to say any more!).

Do others feel as frustrated as I do about the poor quality of much of the ms information / data that is out there - and we're not dealing with a new / very rare disease (there's million of us!).

What can we do: (i) write to national societies etc where information / data is of poor quality and demand improvement (ii) encourage other sufferers to visit this site where at least there is an attempt to question some of the information / data that is presented on official / company sites.

Is becoming a conspiracy theorist a common symptom? I'm certainly suffering from it. I find it incredible that after 50 years of research and $xxx millions, no-one out there can answer questions about this disease that my four year old could ask - why did you get it daddy? what causes it? why do you get so tired? why does it get worse as time goes by? when will you get your next attack? I've seen ms researchers / professors being awarded prizes for their 'contribution to ms research' - for what??? Which of the above questions have they answered? [sorry for the rant but I'm in a bitter mood today]


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Re: Lies, damn lies and statistics

Postby HarryZ » Mon Nov 01, 2004 6:48 pm

Bromley,

The information you read on any MS website is only as good as the people who write it. A lot depends on who is doing the writing, from where they are obtaining their info and how much detail they want to include.

I take part in 10 different MS forums on the net and I believe that the information that you read on this site is probably about the best overall you can get.

MS is different for each patient but at the same time, one can generalize about the disease and how it will effect most people. With RRMS, you at least can get some reprieve from the disease but once it changes to SPMS, the course usually continues without any remissions. But MS has known to reach a certain point in some people and then not progress any further. For others, it continues to become worse and worse.

I think what is important is you do the best you can and try and obtain the best advice that is available. I would like to say that you should always listen to your doctor but most readers on this forum know what kind of garbage can come from some so-called MS experts. You know your body better than anyone else so listen when it trying to tell you something

At the same time family and friend support is critical for MS patients and the more that you can get, the better.

Hope I've helped you a bit.

Harry
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Postby Arron » Mon Nov 01, 2004 8:19 pm

Thank you both for your compliments... it makes us very happy to see that this site is achieving one of its primary "endpoints"-- free, unbiased discussion in pursuit of the CURE for MS, whatever form that takes be it big pharma, off-label, etc.

Knowledge is power. Excuse me for a minute while I get melodramatic: Arm yourselves for the great war against MS. We are going to win.
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Postby OddDuck » Tue Nov 02, 2004 4:59 am

Yes, Bromley.......again I'm going to chime in with Harry and Arron here.

Sometimes we aren't always what I call "warm and fuzzy" 24/7 here, but believe me, we're here and will always run to the rescue whenever one of our "own", as they say (fellow MSer and/or group member) is feeling under the weather or frustrated or passionate, etc. (be it emotionally or physically)! I've got to say, also, that this is the best site I've ever taken part in!

I worried about you all last night, believe it or not. I understood exactly how you were feeling (bitter describes it perfectly! Been there.) I just wasn't able to get back online again last evening to try to say something "wise and wonderful" (even supposing that I would know how to do that anyway). But I wanted to try. I figured, though, that someone else would definitely be online to help you out.

And I'm with Arron...........now that I've been melodramatic, I'm ready again to FIGHT! :wink:

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Postby mscaregiver » Tue Nov 02, 2004 6:04 am

On The Outside Looking In
By MsCaregiver

I do not have the demon
That steals your needed step
But I have the admiration
Of how your faith you've kept

I see your endless struggle
And how you won't give up
Not a cup half empty
Half full, that is your cup

Your body shakes and trembles
Your sleep is never sound
Yet in your waking moments
A smile somehow you've found

Hills to you are mountains
But you climb them anyway
The trip may take you longer
But you make it just the same

While others would just give up
And never see the top
Threw pain and grief and struggle
Nothing makes you stop

You are an inspiration
You are the will to win
You give so much to all of us
On the outside, looking in.

Philip
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Postby Arron » Tue Nov 02, 2004 11:14 am

Philip... excellent....
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Postby bromley » Tue Nov 02, 2004 12:50 pm

Dear all,

Thank you all for your advice and concern. I assume that every ms sufferer has their ups and downs. For me this disease couldn't have come at a worse time - two very young children and a change of job. Having never smoked, taken drugs (medicinal or recreational), restricted my self to one sexual parner (my wife) and exercised on a regular basis (two runs a week) - I really can't believe my bad fortune. Apart from the normal childhood illnesses, I am very short-sighted and suffer from keloid scarring (external scars are riased and red).

Someone must have known me very well to have created a disease that could destroy everything so completely. In addition to having to watch myself physically and mentally deteriorate over the coming years, it has wrecked my dreams (nothing big - just playing football in the park with my son, teaching him to scuba-dive etc).

Most other auto-immune diseases I could have coped with (arthritis, asthma, diabetes etc). They are controllable and I could have done something to help myself - exercise / diet etc. This disease is something else entirely. Firstly it effects the brain and the body - I find the idea that my brain is dying off (or cells within it) very difficult to handle. I like the way that it does not respect your dignity - bladder / bowel problems. Eyes are our most precious asset but, of course, these are also under threat.

Living with this disease is a challenge and a half. I use the word living in the loosest sense - I realy mean existing. Living is what I did before dx day - 27 May 2004. Life now no longer has the same value to me. I said to my wife that I would gladly swap this for a 50:50 cancer - there's at least a 50% chance of getting your life back. With ms there is no chance (unless a miracle cure comes along) of this.

The other horrible angle to this disease is that you know your future - I know I will never be healthy again, never wake up in the morning and be glad for a new day. I know that I'll die earlier than I would have without this disease and that the chances are that I'll die as a consequence of this disease. I've got it for life, it's progressive, there's no cure. Sort of saps one's hope doesn't it?

On the positive side (the only one I can think of) - there's a bunch of decent people out ther trying to help one another by exchanging information and thoughts. It's sad that we couldn't meet under different circumstances.

I'm going to wean my self off this site for a bit - not that it's excellent in many ways but sometimes it highlights the awfulness of this disease. It's good to highlight research findings etc but there's always a feeling of jam tomorrow. I've had one disease in my life and no one could help me - in the traditional sense of helping me get better / get my life back etc. If I'd smoked myself silly they'd be jumping all over me to help (by-pass ops / chemo etc).

We've all got our own stories to tell - I admire those who see this as a fight / make the most of today attitude / keep smiling. Unfortunately, I'm not this type. Some of you out there must hate this disease as much as I do and the way it destroys, in a very underhand way, every aspect of your life. Peace of mind is something I'll never have again. I'm the only one I know who has this disease (apart from you lot) - you have to ask why me? why now? why for the rest of my life? There's living with this disease and living in fear of the disease.

Apologies for the long e-mail but I need to put across an alternative view -of a very angry person who sees nothing but a pretty awful future. Beautiful wife / beautiful children - but the worst disease for me (a leg amputation is something I could have adapted to - its the brain thing with ms that really kills me).

I hope like all of you that knowledge increases about this disease and better treatments are forthcoming. I also hope that scientists and researchers will go out and meet those at a later stage of this disease before they start looking through their microscopes.

I wish you all the best of luck and will hopefully rejoin this excellent website when I get my head around some of these issues and challenges.


Many thanks

Bromley
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Postby raven » Tue Nov 02, 2004 1:10 pm

Bromley

There is life with MS. Many of us here still pursue our careers. I have been diagnosed for 5 years yet still have an active life. I even rejoined a gym today! One of the problems with MS is, it's impossible to predict how any one case will progress.

It's very easy to look at the possible consequences of this condition and assume the worst. The truth is it may never happen.

Whilst MS can take away many of the things that we value, there are still plenty left to cherish.

Robin
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Postby HarryZ » Wed Nov 03, 2004 8:01 am

Bromley,

>I'm going to wean my self off this site for a bit - not that it's excellent in many ways but sometimes it highlights the awfulness of this disease. It's good to highlight research findings etc but there's always a feeling of jam tomorrow. <

When it comes to learning about a disease that someone may suffer, it's always better get as much accurate information about it as possible. Yes, sometimes the info may paint a picture of bad times but wouldn't you rather know all the facts about an illness as opposed to becoming unpleasantly surprised when it takes a turn for the worse.

I constantly read about MS patients on other forums that totally rely on their docs to provide them with all the info and treatment about MS. What happens far too often, though, is docs simply don't keep their patients up to date and the patients find themselves suffering needlessly for months and months.

I received a call from a fellow who was in his 50's and had been diagnosed about 18 months ago. His doc rxd Avonex for him and this fellow told me that he had been sick for the entire 18 months while on the drug. He could barely keep his job and was going to have soon quit that because he felt so ill all the time. He told me that he contacted his doc about a month ago and told him how lousy he felt....the response....Avonex is the best thing for you now so keep on taking it!!!! Unbelievable!! There are a number of alternatives that this person could be doing but here he was, totally unknowledgeable about MS and relying only on what his doc was telling him.

I hope you continue to read the info that is presented on this site and stick around....I doubt you will regret it.

Take care.

Harry
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Postby OddDuck » Wed Nov 03, 2004 9:48 am

Harry,

Well said!!!!!

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Postby pinda » Wed Nov 03, 2004 6:29 pm

I have not posted very much but have read and learned through the last few months. In answer to "why me", why not? Most everyone goes through life with some sort of challenge or challenges. When one says they would rather have cancer, I have a non invasive cancer and live with the chance of it becoming invasive every day. Living with a neurological dx but no label is just as uncomfortable and would not want anyone to have to go through either. Learning all I can about both has helped me to cope and move on. I also hope to help others. Hard for anyone when first diagnosed, or not. We all cope differently and I hope Bromley will continue to read if not contribute. This may help to answer some of the questions and read that others are like him and do find some peace. Life is too short and precious to let it slip by, enjoy your family etc. and look for the positive as much as you can. Good to vent and cry to release those endorphins too. (not sure of spelling but the good feeling things) :) My vent for now. Does feel good to say things sometimes. Linda
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Postby mscaregiver » Wed Nov 03, 2004 7:17 pm

Hi Linda and thank you for your post and welcome to the forum, hope to see you posting more.

Philip
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Postby magpie » Thu Nov 04, 2004 4:05 am

Bromley

Everyone reacts to the dx of MS differently. I reacted very similarly to the way you have. It took me quite a few months to work it through. I was very frightened of what the future might bring, I had a need for information but at the same time it scared me. I now believe that it is better to know as much as possible so that I can try to help myself. This forum is a good place to vent your frustrations because there is always someone listening who really understands. I said, 'Why me?' quite a lot too but then I realised that there are so many people who have illnesses that they haven't asked for. What about all the premature babies struggling to start their life? At least we have known health.

What you are going through is a kind of bereavement and you will have to take time to heal. Remember that your wife and children still need you Bromley no matter what. Just because you have had a dx of MS doesn't mean that your life is over. Remember you don't have to identify yourself by your condition there is more to you than MS.

It will get better :wink:
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Postby jazzcat » Thu Nov 04, 2004 9:33 am

Hi Bromley,

Of course it's terrible to have a dx of MS. Who would want it? I, like you, have lived my life in a very clean-living way. The reality is, and not wanting to lapse into cliches, but bad things happen to good people. No, life will not continue as it was. It never does. I do see MS as a test for me, though. I am being tested, as are the people in my life. Sad to say, I've had real problems with the people around me. I have accepted my "life change" with resolve. Yes, MS sucks (there's even a website by that name, have you seen it?) I am not one of those "MS is the best thing that ever happened to me" people either. That sentiment really frustrates me. I don't feel in tune with that sentiment at all. That being said, I went to a MS group after my dx and there were people whose lives had been very affected by their MS and those who had had very mild courses. All assured me that MS was better to have than a lot of diseases and there are many things you can still do. I have chosen to focus on that. Perhaps substituting new activites for old ones I have had to leave behind (enjoying a simple walk, for instance....) You say you will never be able to.... if you start out thinking this way, you never will be able to do what you say you never will be able to do. This life and living with this disease is a real crap shoot. Still, as I'm sure you're aware, we who live with MS now do have some options that were not available in the past.

#1. CRAB treatment for those who have access to it and choose it
#2. Diet information to help us live well (Swank diet? Dr. George Jelinek's approaches?)
#3. Apparently the march has gone forward in terms of treating symptoms and using assisting tools
#4. Research does continue and more breakthroughs will follow both in terms of reaching a cure and in terms of better treatment of disease course and symptoms
#5. Information and communication is more accessible in the days of the PC and internet; it's easier to get and share good information.
#6. Technology and knowledge are advancing. That will help us get closer to a cure.

I know it's hard at times, but I thought up a phrase, "Choose to live in hope." Sometimes, it takes some mental reframing and redirecting of energies. But, hope is free and it can sure ease the burdens that come with MS. I choose to read up on all the research, gather all the information I can, and hope.

Also, I want to share with you that other diseases aren't that great either and an amputation isn't so easy. My mother just had her leg amputated because of a combo of things--a bad break/II diabetes/oteoporisis. The loss is great and the adjustment is difficult. It has changed her life, too and she has had to give up some of the things she loves or things she just took for granted before.

Living with unpredictability isn't easy. Still, anyone could get hit by a car tomorrow or wake up with an aneurysm. We never know what will happen to us. I realized that the unpredictability bothered me, so I analyzed it a step further. I realized that there were a few things I could do about managing my finances that could give me some peace of mind. I say, spend some time analyzing what really worries you about the unpredictability of it all and look at which variables you can change. Then, make the changes you may and give yourself a little padding where you can, if you can.

I know you said you will be weaning yourself from this site. Perhaps you will never read this. Still, I felt a need to share this with you. Also, in case you haven't expored the Swank diet, there is a Swank Foundation website. Interesting info about linking saturated fat and trans fat intake to MS progression. If you can limit that, Dr. Swank believed you could slow the prgression of MS. Check out the site. I highly recommend it!

Well, bromley, I wish you better days ahead.

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