If you're going to have ms, now is the time to have it...??

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If you're going to have ms, now is the time to have it...??

Postby elly » Tue Jul 24, 2007 2:47 am

Hi guys,

I was recently on the phone to the ms society in my state getting info on meds and talking to the social worker.
The social worker sounded almost excited and told me that if anyone is going to have ms that now is the time to have it 8O ...thanks but i'd rather not.

I have heard this said before when i was in hospital getting a dose of iv steroids by the neuro there. It seems that because we have some meds available now that were not available 10 years ago that it's seen as being a disease that may not be as severe as what it once was. Because ms is now "treatable".
Do you think this optimism is misguided?

I realise that there is more info available now than there probably ever has been in regards to supplements, diet, excercise, meds etc to possibly help this illness, how do other people feel about the new ms generation that may be on one of the crabs....do you think threre will be new statistics in regards to disease progression and disability in the future?
Do you think disability further down the track MAY be less in years to come compared to what it is now?
I know this is another crystal ball question as most of my questions are but i can't help but wonder if there could be more positive outcomes, milder disease courses and less worse case scenarios with this disease for those who take one of the crabs. ( I know that others who take nothing could end up just as good and some who take meds may not be so well ).
Of course it would make me very happy to know that these things could be possible but i'm just ridiculously optimistic sometimes :roll: :D... what do you think?

Elly
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Postby robbie » Tue Jul 24, 2007 6:11 am

If you ask anyone that is doing not to bad I’m sure they will say yea this is the best time to have ms, If you talk to someone that has been through one of the crab treatments and is now not doing so good they will say we are no further ahead than 20 years ago. I’m sure in the not to distant future there will be some new drug that we should all get excited about and then it will fade away just like many mser’s that are beyond a certain point. You have to keep the hook baited and make the research look nice and juicy for all the investors and their money. As for your question Elly I’m sure you will mostly get positive answers and yes this is the time to have ms and research is at an all time high even though they still know nothing. You just have to believe what you want to believe.
I think the best research to date is the fact that only 1 in 4 people with ms will need a wheelchair in their ms lives.
Had ms for over 19 years now.
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Re: If you're going to have ms, now is the time to have it..

Postby HarryZ » Tue Jul 24, 2007 6:32 am

Hi Elly,

Not to sound negative right off the bat, the kind of comment that you heard from the social worker about MS is pretty much the same comment that was being made 25 years ago! My wife Marg has had MS since 1971 and we have heard this many times over the years.

On the other hand, it is true that more is known about the disease than what was know back then and there are many more medications available today to treat MS symptoms...thus making it a bit easier to live with the disease now.

What hasn't changed, though, is nobody knows the cause of MS and despite several new drugs that are being used, disability progression continues. In some cases, the progression appears to be slowing down a bit but that's about it.

I will agree with Robbie in that a MS patient's outlook will be determined by his/her experience to date with the disease. If the patient has been relatively newly diagnosed, the outlook will be brighter. If the person has lived with MS for many years and the progression has been continuous, then obviously that person is going to look at it with a different perspective. The surrounding social situation for the MS patient will also effect how this person handles the disease.

Take care.

Harry
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Postby gwa » Tue Jul 24, 2007 7:47 am

Tell the social worker to call you back if she is diagnosed with MS and let you know if she still thinks it is a good time to have it.

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Re: If you're going to have ms, now is the time to have it..

Postby Lyon » Tue Jul 24, 2007 2:45 pm

elly wrote:The social worker sounded almost excited and told me that if anyone is going to have ms that now is the time to have it 8O ...thanks but i'd rather not.
Hi elly,
Like the social worker I don't have MS. I agree with the truthfulness of some of what the other posters have said, but I mostly have to honor that they've experienced and endured the disease and I (thankfully) haven't.
elly wrote:It seems that because we have some meds available now that were not available 10 years ago that it's seen as being a disease that may not be as severe as what it once was. Because ms is now "treatable".
I share the optimism of the social worker, but not for the same reasons. I'm not convinced that MS'rs are any better off with the current treatments than they were prior to 1993.

What I've said in the past, and still firmly believe, is that although there is no good time to be diagnosed with MS, now is the best time in the history of the disease to be diagnosed.

Harry and robbie were right in that understanding the cause of the disease and understanding the disease itself is essential to a "cure" and that we are no closer to those answers than we were 150-200 years ago.

That seems pretty dismal unless you consider that, unlike ANY time in the past, recently researchers have stumbled upon several different things, admittedly not related to the cause, which are consistently and dramatically able to arrest the MS disease process.

No, I can't say that the effect will or won't last a lifetime, although all of these treatments have patients successfully several years out. No I can't say that these treatments are going to be available right away or that most people would or should choose to endure them. I can't say that the mediums used are the exact same treatments which will eventually be offered to the masses, but what I can say is that in this area researchers are advancing leaps and bounds. Maybe not towards a "cure" for MS but towards an acceptable resolution to MS in the near future, possibly before knowing what causes MS or much of anything about the disease process itself.

Finally, regarding the "cause" of MS. I've waited until the end to expose myself as the nut I may be.

I think many researchers are wise to the cause of MS and it's slowly being accepted by a larger percentage of the research community. Sadly this situation isn't one which researchers are comfortable embracing.

For researchers, embracing this situation is a little like standing alone on the shore of Loch Ness and personally witnessing "Nessie" chow down a little boy and subsequently having a search party ask if you know the whereabouts of the boy. You know damned good and well what you saw but opening your mouth will only place doubt on your sanity and put the future of your reputation in question.

P. ZACCONE, Z. FEHERVARI, J. M. PHILLIPS, D. W. DUNNE & A. COOKE. Department of Pathology, Cambridge wrote:The Hygiene Hypothesis suggests that parasites and microbes have been important for shaping and tuning the evolution of the human immune system. According to this hypothesis, the immune system is in a state of preparedness, primed to repel the pathogen assaults that characterized the lot of humanity for most of its existence. In developed countries industrialization has strongly contributed to human migration from rural areas to the cities. One of the consequences of resettlement has been the removal of people from the pathogen-replete ecosystems in which their immune systems had adapted since prehistory. Sanitation, and access to clean food and water became a common life standard for most individuals in the developed world. Additionally, following the Second World War the use of antibiotics became commonplace, dramatically altering exposure to bacterial pathogens. The fact that infections were no longer prevalent has led to the emergence of autoimmune inflammatory diseases. This suggests that parasites, if not actually preventing autoimmunity per se, at least divert the immune system to the more productive cause of limiting tissue pathology. Parasites themselves wield an astonishing array of mechanisms to evade the ravages of the host's immune system and in so doing ameliorate the more self-destructive aspects of a response.


Although this regards an earlier study, this assessment was delivered by google alerts today http://tinyurl.com/2s53mu

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Postby robbie » Tue Jul 24, 2007 6:57 pm

You are a very optimistic and hopeful man Lyon, if there are any of us lacking optimism you have enough for us all. I only hope even half of what you think will happen, it's a little late for me and hundreds of thousands of others but for the rest i hope.
Had ms for over 19 years now.
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Postby Lyon » Wed Jul 25, 2007 1:38 pm

Thanks robbie. My wife's MS is very mild and she (we) would be more than happy to stop the disease process and call things good enough, so stopping the disease process is what I've spent the vast majority of my time investigating and in that regard I'm confident of everything I've said.

While I don't have the information to back such confident optimism for someone in your situation I do have a lot of confidence in my logic and that the information shows that researchers have based much of their beliefs about SPMS and PPMS on misconceptions. It's just my opinion but I believe that your situation isn't nearly as bleak as people in your position have been led to believe. On the other hand, I'm starting to realize just how DAMNED long it takes for anything to happen so I couldn't even guess how long it will take researchers to realize their mistakes and use that information to make headway.

Check our frank's post http://www.thisisms.com/ftopict-4252.html to see how adaptable (plasticity) brain tissue is. Of course their is a big difference between forming brain circuits in youth and trying to change those circuits in adulthood but instead of finding that things are bleaker than thought it seems that, when it comes to adaptability of the brain, we are often finding that things are more hopeful than was thought in the past.

http://www.nbc10.com/health/4563166/detail.html Notice the video in the "Feedroom"

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