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

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

Postby fightingms » Wed Nov 02, 2005 10:02 am

You know I left all forums for about a year because I was so sick of reading new trials, new meds,new articles,new causes of MS, ect. ect. ect

I was in a trial for almost a year....guess what the meds, mixed with my symptom meds,dried my mouth out to the point where I need dentures because of the bacteria that spread rampant in my mouth due to dryness

This disease SUCKS. Why is everyone spending money on everything but something that will help us ALL. RR SP PP ect.

In our government the squeeky wheel gets oiled. Look how fast,when the government started funneling millions, Aids patients got Meds that actually work. What is 30 to 35% { and I'm on one} going to help in the LONG run?

Dosen't it make you sick that our government is spending Millions of our tax dollars on Aids in Africa? {US} What about us? It has been statistically proven that the number of Americans with MS is grossely understated.

How many lobbist's do you think the oil company's have??? We need more money funneled into MS. What, a crippling disease is not as important as a killer disease? I'm sure many of us have felt Dead on certain days.

I want to have sex with my husband and feel it again.....I want to have more good days than bad.......I want meds that work.......I want to go back to work full time....I want to Not Need disability........I want to feel my fingers again.........I want to do laundry again......I want to plan something on Monday for Saturday, and know I will have the energy to do it.......This disease SUCKS!!!

It changes you personally...your family.......your marriage...your job......your everything. We need to all call our congressmen, our Senators, our Govenors, ect.

The squeeky wheel gets oiled in this country it is time for the MS community { and The NMSS to funnel money into lobbiest's}to squeek very loudly. There are more of us than the government knows.....We are not just the happy people climbing mountains on the CRAB literature.


Sorry if this post seems abrupt but I am fed up with this disease after 6 years........what about the next 6?

Can you tell I am having a bad day?........Kim
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Sorry about your bad day

Postby Brownsfan » Wed Nov 02, 2005 11:16 am

Sorry to hear about your bad day. I certainly agree with what you said though. Think about how much money our govt. spends on AIDS, which is a PREVENTABLE disease. As far as I know there isn't much we can do to prevent MS and govt research and funding is seriously lacking.
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Re: MS SUCKS and it is time our Government KNOWS IT!!

Postby HarryZ » Wed Nov 02, 2005 6:15 pm

Kim,

Marg, my wife, has had MS for about 35 years and I could have quoted several of your comments and applied them to what she has said many times over.

The amount of money that our government and medical world is spending on other things as you mentioned as opposed to helping MS patients have some quality of life is astounding. There is no easy answer to all of this and it hurts even more when I have to watch Marg suffer every day.

Hope you feel a little better soon.

Harry
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MS Sucks

Postby Brainteaser » Wed Nov 02, 2005 7:09 pm

No one who does not/has not had MS can possibly understand what MS is like. Even neurologists, GP's, MS Society personnel, family, friends and/or partners really know, albeit that some of them are more sympathetic than others. I've had MS for 25 years and you are quite correct that it truly does 'Suck'.

However, moaning and groaning is not going to get results and the only language governments understand is $.

On a positive note, there is far more opportunity around now than there was, say 5 years ago, given the potential offered by various stem cell programs (most outside US/UK/ Aust. etc), tovaxin, neurovax, aimspro etc.

I believe that our only hope in the short-term is that unless we are fortunate enough to be in a trial with above-average potential, is to seek out stem cell therapy overseas. Perhaps in time when all the Asian countries have cornered the Globe in terms of stem cell science and associated financial returns, our governments might finally wake up to the fact that it would have made more financial sense to be agressively saving its citizens by stem cell science rather than 'saving' them in other ways, including conducting noble wars which they are unlikely to win.

Thoughts for the day,
Regards,
Phil.
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Postby Brownsfan » Wed Nov 02, 2005 10:11 pm

Phil, I just finished reading a book written by George Jelinek MD, an Australian doctor who has MS. Mostly focuses on alternative therapies but also touches on conventional medicine. Best text I've read so far about MS. Is this a well-known book down under?
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Re: MS Sucks

Postby HarryZ » Thu Nov 03, 2005 6:01 am

Phil,

Stem cell therapy is certainly in its infancy as a treatment for MS. There is so much unknown about it at this time that it is difficult to assess just what kind of benefit it gives MS patients. And there are different types of stem cell transplants which adds to the confusion.

So far from what I have read, the MS patient initially seems to get better but then reverts back to where he/she was in the first place. The procedure has been used so rarely so far for MS that it is difficult to come up with reliable data that can be published. Some procedures, like the one done at the University of Ottawa by Dr. Mark Freedman, are very risky and can cause death.

I have asked the question in the past that if a stem cell transplant changes your immune system, what happens a year or so later if your MS is not caused by your immune system going astray? After all these years of research they still haven't been able to say if MS is definitely an autoimmune disease or what causes it. As always with this lousy disease, far more questions than there are answers.

Take care.

Harry
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Postby kitkat2 » Thu Nov 03, 2005 7:35 am

Kim,
Same for me... I have only been dx'd for 4 yrs, and I felt the way you do almost immediately. It was like that old tale of the emperor's new clothes: Except I refused to accept what everyone else seemed to 'take in stride'.
One might think that our gov't should be concerned about the growing loss of viable workers in this country, related to ms. Just look at the recent importance placed on being 'ready' for the bird flu. The biggest reason being that our country does not want to be economically compromised by having hundreds of thousands of sick workers if this flu becomes pandemic.
Makes one wonder if ms needs to become pandemic before anyone take it seriously(?)
Very frustrating.
Holding out hope for Liberation!
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Postby Jaded » Thu Nov 03, 2005 12:08 pm

Kim

I totally agree with you. It's ok - we all have our bad days.

Harry is right about the stem cell stuff not working for us - and as Brainteaser says they have not identified the root cause.

Yes we need lots more research. How could we change the minds of those in power?? :x

Best wishes and I hope you are in a better place today. :wink:

J.
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Postby kitkat2 » Thu Nov 03, 2005 2:14 pm

Shall we all go to Washington?
Holding out hope for Liberation!
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Postby bromley » Thu Nov 03, 2005 3:10 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
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Grumbling

Postby Brainteaser » Thu Nov 03, 2005 8:13 pm

Hi Brownsfan,

Yes, George Jelinek is well known down here and he has written a good book which should be standard reading for every new MSer. However, George has had MS for only 5 minutes and he's very able at self celebrity promotion, so I personally don't get too enthused about him.

Harry,

As always, you convey excellent and wise counsel, albeit somewhat conservative. Perhaps the core difference between us though is that you don't personally have MS. When you are 55 like me and you have had MS for half of your life (presently EDSS of 6.5), then you start to see things a little differently and are prepared to be less risk-averse. The fact that stem cell treatments are going ahead at a great pace beyond our shores whilst Western science is not well-developed is my precise point. For anything new there will be a process of trial and error. In my opinion our scientists and authorities need to take those steps sooner rather than later, at a greater pace or risk being kept on the outer in a new stem cell world.

Regards,
Phil.
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Postby LisaBee » Thu Nov 03, 2005 8:52 pm

I do hold out hope for better understanding, better treatments, and a cure. I don't hold out a lot of hope that it will come in time to do me any good. It might. It might not. I don't count on it. The one thing I hang onto in that department is my own intellectual curiousity into the cause of MS. If I can throw some light into the dark before I go down, that helps keep me going for a little longer.

For myself, like Bromley, it is easier to think of MS as being a terminal disease. I have gotten the typical stupid reaction from people, who say 1) that MS doesn't kill people, and 2) that people with MS live a normal or near-normal lifespan so it's not that bad, implying that somehow a long, miserable life is preferable to a short decent one, 3) there are worse diagnoses to get, like ALS, and 4) it's God's plan for me. I don't believe 1 or 2 are generally true, for 3) the biggest challenge for MS is uncertainty with making life decisions, because unlike ALS, we don't know how we'll end up MS-wise, and 4) God has the same general plan for everybody, which is that everybody dies, some sooner in life, some later. Coming to terms with mortality has actually been a big anxiety reducer for me. Having MS has greatly reduced my fear of dying, to the point I no longer fear getting cancer or any other disease or dying in general. I could get other nasty diseases. I just don't worry about them anymore, because to me, the worst has already happened.

I knew there was something wrong with me for several years before I was diagnosed, perhaps even going back to my early 20s, 20 years ago. The feeling of wrongness slowly grew over time, a sense that I was eroding, like watching a skater go into a death spiral in slow motion. The circling the drain feeling. I was not a big fan of going to doctors and there was nothing symptom-wise except for lack of energy for a long time, when some neuro-type symptoms appeared I waited for them to go away, which they did. My symptoms are still mild but they are worse than they were and I realize that it is all downhill from here on out. For me it has been gradual, almost imperceptible slide. But if someone didn't know there was something wrong with me, even a neurologist, they wouldn't see it.

So what to do? It has been more than a year since diagnosis. I'm putting myself on a six month plan. Six months to wrap up affairs, simplify my material life, do the best I can at my job, read the books I want to read, figure out which unfinished projects I really want to finish and let go of what I'll never get to now. Six months to catch sunrises and sunsets, listen to good tunes, live in the moment, and suspend all expectations, good or bad. I am a loner with no friends or family close, so I won't be able to make it to EDSS 6 and stay alive. If I can no longer drive to work (I drive a stick shift so I need both feet) no longer see well, no longer do my job, no longer buy food at tbe store, I'm a goner. People might argue about my cutoff criteria, but it is what I've chosen for me and I don't apply them to anyone but myself. Determining the acceptable level of quality of life is a very individual thing. If after six months I'm still around and hanging in there, then I'll go for another six. Because I don't really know what is going to happen. Neither, really does anybody. The world is full of people loaded with vibrant plans who get killed in car accidents.

I figure I could go bad at any time, so to speak. Or, I can muddle along for a few months or years longer still functional and gleaning something worthwhile out of my life and contributing something to the pool of human existence (whatever that means).

I've also read that there is no such thing as benign MS, but I'm not sure that's true. In my more cynical moments, I suspect the marketing whispers of the CRAB manufacturers to start early, no matter how mild the disease and keep injecting forever. However, there ARE people with a very mild course of disease; I've heard from someone with MS who worked, raised children, ran races, after 25 plus years now having only a mild problem in one leg. Or about a 65 plus year old woman with MS of many years standing who has worked up until recently, walks with a cane, is active in church and community, and stays mobile with the help of frequent physical therapy. She is at least as well off and probably even better off than a decent percentage of other women her age. Neither of these people have taken CRABs. If benign means "not affected" then it is probably true that there is no benign MS, but it benign means relatively minimally affected, especially in relation to one's age, then there is benign MS.

Do I think I have benign MS? No, but I really have no idea. I probably have had MS for 10 years, and possibly even 20. Do I think I have severely progressing MS? No, at least not right now, but that could change. Or not. Would a CRAB change my prognosis? Maybe. But I have decided I would rather have the best quality of life I can have in the next six months, I'll trade for a better quality near term than making myself feel unwell with a CRAB in the hopes of a not-as-bad later. I'm already over 40, so that's a factor; if I was 25 I might feel differently. Treatment choices are very individual decision for people to make.

I think it's hard not to let dread be worse than the disease, and focusing short-term plans helped me cope. Other people may have different strategies. There's no single right way to go.

Lisa
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Re: Grumbling

Postby HarryZ » Thu Nov 03, 2005 10:08 pm

Phil,

You are absolutely correct when you say that someone like myself (56) views MS differently than the patient. Although I have lived with my wife for 30 years and she has had MS for 35, I can't possibly understand the disease like you can. In fact, my wife has said that to me on more than one occasion.

What I do often is ask Marg for her opinion on certain things when a MS patient may ask me for some advice. But trying to convey that in the written word when I don't have the disease can be most difficult. Also, many comments that have been made on this thread regarding the frustration of the MS patient have been echoed by Marg several times.

When it comes to stem cell treatment for MS, my caution comes from so many promising treatments for this disease in the past that have ended up proving useless for MS. While stem cell transplantation is now starting to gain full steam (at least outside North America) it has a long way to go before we know what it can do for MS.

Take care.

Harry
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Postby fightingms » Fri Nov 04, 2005 6:22 am

Yes.......The MS walk???????? Let's take it to Washington.

Agree with most postings.....

Brown's fan...right across the border and a die hard steeler fan. 8)

More later.......thanks for the reply's........Kim
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Re: Grumbling

Postby Melody » Fri Nov 04, 2005 6:40 am

HarryZ wrote:Phil,

In fact, my wife has said that to me on more than one occasion.

Harry


Now my hubby usually refers to the WE when talking about MS. Example like WE are going for this test or that or WE have decided to go with this or that for a treatment. As WE are in this together. He swung quick the other day and had me laughing for hours and still chuckle over it. I can't remember the exact treatment but it was here I saw it and I was reading it to him. I then said I wonder how WE go about making sure WE are first inline if it opens in Canada. He said "WE can do anything WE want but I'm not going to be a guinea pig for that one". There is that dividing line.LOL
:lol:
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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