Doubt!

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Lyon » Mon Dec 03, 2007 2:55 pm

robbie wrote: MS as i'm sure you know is a chronic progressive disease and will always be there, it just may not be showing itself for now. I too in the early days had MRI's that showed no activity, but like my neuro said it's just one picture in a long movie with thousands and thousands of pictures.
Hi robbie,
It's pretty important to understand that the description "chronic progressive disease" is nothing more than that, a description used to describe what has been observed in the past. No more and no less.

I don't know much about Tuberculosis but that was a "chronic progressive disease" which affected lots of people through history. Now, it's been almost eradicated. With improvements in testing and treatment, it's no longer "chronic progressive" if you do get it.

Sure, if a person can only focus on the past of MS the future looks pretty grim. But the past only defines what has been and isn't necessarily descriptive of what will be.

I can see how someone who's had MS very long can't help but eventually getting a born loser attitude. Getting your hopes up again and again and again and again, until finally coming to the conclusion that getting hopes up only inevitably leads to having them dashed.

Like Chris I'm not going to use the word "cure" but it is certain that there is going to be a satisfactory resolution to MS and there are signs that it's going to be in the near future.

Now, you tell me why it can't happen in time to benefit you. "Because it's never happened in the past" is not an acceptable reason.

Bob
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Postby robbie » Mon Dec 03, 2007 3:12 pm

but it is certain that there is going to be a satisfactory resolution to MS.

It's just around the corner.
Had ms for over 19 years now.
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Postby Lyon » Mon Dec 03, 2007 4:23 pm

robbie wrote:It's just around the corner.
I think there might have bee a little sarcasm involved on your part but I'll agree.
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Postby viper498 » Tue Dec 04, 2007 6:40 am

I certainly don't want to encourage the negativity, but can you blame his sarcasm? He has had much taken from him over the years, and nothing returned. Its always "5 more years", "its just around the corner". I kind of feel the same, and this disease has only been a part of my life for a couple of years.
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Postby HarryZ » Tue Dec 04, 2007 6:50 am

viper498 wrote:I certainly don't want to encourage the negativity, but can you blame his sarcasm? He has had much taken from him over the years, and nothing returned. Its always "5 more years", "its just around the corner". I kind of feel the same, and this disease has only been a part of my life for a couple of years.


Back in the early 80's, the answer to MS was just around the same corner! I won't tell you how many times Marg and I heard that comment in the several update seminars that we attended during that time. Then, in the 90's, the focus changed to the fancy charts and graphs telling us how wonderful the interferons were working. That "corner" was still there and yes, it also remained at 5 years.

Well, here we are, 2007, and I still hear about that "5 year corner". What has changed a fair amount is the ability to treat many of the MS symptoms. But I have yet to see anything really significant that will unlock the mystery of this lousy disease. The main focus is still geared towards long term and very expensive drug treatments. The grass roots university research continues but doesn't get anywhere near the amount of funding it needs to solve MS.

Harry
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Postby Chris55 » Tue Dec 04, 2007 6:53 am

Hello my good friend Bob! Nice to hear from you. A few comments on your post....

This post, I thought, was all about alternative options and whether or not to take the leap. My ONLY point was: Why the hell not? As you know, I am totally unimpressed with what research/med community has to offer all of you. We have reached that point where cures are not found because they are not sought. "Treatment" is the key---generates lots of money for a long time. Shame, shame, shame is my feeling!

I am not simply "convinced" that my daughter is doing well, I KNOW that she is and that's a huge difference. The significance of her doctor's assessment--your MS has stopped--is critically important to my positive thinking. We aLL know there is no way an MS specialst is going to make a statement that bold if he is not certain of what he is saying. (The pitiful part is that he thought it was because of Avonex, not knowing she was trying something different and had stopped the Avonex eons ago!)

My only point to this thread is that if it DOES NO HARM (and this is so very important!) and if it does not cause you to mortgage your home, what have any of you got to lose? And if these alternative treatments end up actually helping--significantly--look what you have gained.

None of us knows what our futures hold. I have already decided I am going to slip in the bathtub, break my neck and drown! I do know if what my daughter is doing ever fails to help her, she will look for something else...LDN, diet, etc. And if all else fails, she knows what she can go back to...an MS med with all of the symptom relievers.

I had totally accepted this treatment when she decided to try this other treatment. I was stunned but supportative. I did not believe there was a risk of stopping a treatment that was working--it wasn't.

I refuse to look ahead and project gloom and doom. I will take this disease like I live my life--one day at a time. We none of us knows what lays around the corner and that, I am sure, is a blessing!

As always, my very best to ALL of you. I genuinely care about each and every one of you! Chris
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Postby MattB » Tue Dec 04, 2007 6:58 am

Although very cliche by now happiness is linked with healthiness. If you can somehow find a way to drag yourself out of the dumps you'll probably feel somewhat better even if it's only in your head and not for real. This is another one of those things that as far as I know(and I don't know a lot) that may exacerbate your condition: stress.

I got that whole spiel when I first started showing signs of MS, the whole "it's very treatable and better treatments are being found all the time." Now for sure I know after some research that a "cure" is not going to be found tomorrow. I really doubt a neuro is going to come to you and say "Sorry ---- but there is no hope for you." They're going to use the tools available to them in every possible way in hopes of helping(if you have a good neuro anyways) Here's to the member on here who's name is CureorBust!
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Postby ssmme » Tue Dec 04, 2007 7:18 am

MattB,

Well said...I'm toasting you with my morning cup of coffee...Here Here!

Marcia
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Postby Lyon » Tue Dec 04, 2007 11:21 am

viper498 wrote:I certainly don't want to encourage the negativity, but can you blame his sarcasm? He has had much taken from him over the years, and nothing returned. Its always "5 more years", "its just around the corner". I kind of feel the same, and this disease has only been a part of my life for a couple of years.
Hi Brock,
I could never blame robbie or anyone with MS for their doubt. One "good" thing about being an old codger is that I've been around for a good many years of the "hopeful new discoveries" in the world of autoimmunes and it wasn't lost on me that they invariably were either never heard of again, or in the best case it was later announced that they were failures. Although not affected on the personal level as someone with MS, they are all filed away in the dark cavern I call a mind.

There is no doubt that stopping the disease process "in it's tracks" doesn't hold the same reason for optimism for someone with a higher EDSS, like robbie, but I hope that even in robbie's situation, stopping progression of disability would be considered a favorable development.

My buddy Chris55 wrote:This post, I thought, was all about alternative options and whether or not to take the leap.
I won't lie, in the strictest sense Professor Von robbie was only asking whether anyone on conventional treatment had ever questioned their decision.....questioned if maybe their outcome might have been more favorable if they had gone with an alternative treatment.

You've got to admit that the obvious question that raises is "out of all those alternative treatments with testimonials but without documentation, what sensible method might a newbie use to choose between them or, for that matter to choose if ANY of them are right for her/him?"
My only point to this thread is that if it DOES NO HARM (and this is so very important!) and if it does not cause you to mortgage your home, what have any of you got to lose?
Although I'll never agree that Frankenberry, or whatever that crap was, but among the "respectable" alternative treatments, I agree to what you're saying. Where our opinions seem to differ it's in respect to the fact that it really seems that you feel there are no boundaries to this and I (and others) feel duty bound to warn others about the shamelessly blatant, profit driven scams.

MattB wrote:If you can somehow find a way to drag yourself out of the dumps you'll probably feel somewhat better even if it's only in your head and not for real.
I don't personally have MS, so I can't say, but that certainly seems like wisdom beyond your years!

Bob
Last edited by Lyon on Tue Dec 04, 2007 1:07 pm, edited 1 time in total.
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Postby Chris55 » Tue Dec 04, 2007 11:42 am

Again Bob--if it does no harm and doesn't break the bank I still see no reason not to try if that is what someone wants to do. My daughter based her decision on someone else taking the plunge first (albeit not for MS) and experiencing amazing results. My daughter was actually doing qutie well in the MS world at the time. One of the reasons I was quite taken aback.

Because it was affordable, not harmful AND she had to stay on all of her prescriptions, why not? The very worst would be no change. Nothing ventured, nothing gained.

I still believe folks on this site are highly intelligent. I would never pursuade anyone to do something they don't want to do. But I did think this site was for sharing. (I posted my daughter's story under the Natural category).

Guess I felt like her story was worth sharing.
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Postby ssmme » Tue Dec 04, 2007 12:22 pm

I really enjoy a good game of odds..craps, blackjack or whatever but when it comes to my choices of treatment for MS I don't feel I'll always have a second chance to try if something doesn't work. The odds game here isn't as fun to play. What if I wake up tomorrow and can't see and then the sight never comes back or can't walk and don't rebound from it. That's the quandary I have with every choice I make about my MS treatment. If it doesn't work will I be worse off or better off or no different. I hate this predicament. There are choices but good or bad remains to be seen as hindsight to the chooser.
Marcia
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Postby Lyon » Tue Dec 04, 2007 12:51 pm

Chris55 wrote:Again Bob--if it does no harm and doesn't break the bank I still see no reason not to try if that is what someone wants to do.
Hi Chris,
For some reason it feels you have it in mind that we are disagreeing, and I don't think that we are.

I don't want to push you too hard because I understand that your intention is just want to post your daughter's results for the consideration of others, but I really would like your opinion on how someone new to MS or unfamiliar with the various alternative treatments could make a knowledgeable decision based on scattered testimonials and in the lack of documentation?

Like you, I don't have much regard for the medically accepted treatments, but data has been compiled and a lot of intelligent people are convinced that the data shows that they work....a little.
Chris55 wrote:(The pitiful part is that he thought it was because of Avonex, not knowing she was trying something different and had stopped the Avonex eons ago!)
Considering that a lot of people coming to this site are desperate from their recent diagnosis and unfamiliar with the disease and unfamiliar with the treatments, conventional and unconventional. Can you see that your above statement, to someone desperate not to progress and not to give themselves shots, could be read by a newbie as being a situation that it isn't really?

Hopefully you will see the validity in this comparison. You and I know full well that people have won the lottery. Does that justify our buying a lottery ticket and quitting our jobs?

Bob
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Postby robbie » Tue Dec 04, 2007 1:19 pm

Chris i think stopped is just another word for remission or maybe she has had an CIS or maybe it's not ms at all, what ever the case shes doing good and thats all that matters.
It's so hard for a parent to accept that their child has this, my father died while i was still working so he didn't see me get to bad and that was a good thing.
MS as i'm sure you know is a chronic progressive disease and will always be there, it just may not be showing itself for now. I too in the early days had MRI's that showed no activity, but like my neuro said it's just one picture in a long movie with thousands and thousands

I'm not sure this will matter to you Chris but just in case your supplements don't work and your daughters ms continues be real for her and accept what will happen. I get really frutrated when people say you'll be ok something will happen to take it away but the reality is there is nothing, hope is the only thing and that can only go so far.
You know i read what i wrote and it really does not apply to your daughter or does it apply to most of the people here, even with a mild disability you can live your life as normal as i did for years, it's only become ms for me over the last several years. Sure theres' the thoughts of ms from the beginning and what will my future be like and before you know it you're in your future with little problems doing what everyone else does. When and if it really hits then it changes, you have to think of making modifications to your house, think how hard it is to shower or get dressed, the list goes on and on to include pretty much everything in daily life. We can say all we want in cyber space i only know you and everyone by your name in type not what you go through and what your daughter goes through day by day but it sounds like you could pass her on the street and her ms would be invisable, that's great!
Had ms for over 19 years now.
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Postby TwistedHelix » Wed Dec 05, 2007 7:43 am

Chris,
I intended no irony. If my memory serves me correctly, (and it probably doesn't – I think the holes in my brain are beginning to join up), the "pulverising" was aimed at a poster who appeared to have very questionable motives: at the very least a proselytising agenda, at worst something to sell, and having experienced decades of dashed hopes and falsely raised expectations I get very angry about that, (I don't think it was me who used that word: although it's my favourite word and very common currency around here I know not everyone finds it as useful/funny/expressive as I do).
That kind of salesmanship is the very opposite of the sharing of different ideas and experiences which this site encourages. You have a valuable story to tell and I'm so pleased your daughter is doing well, but I must focus on what your doctor said immediately after saying the MS has completely stopped: he said, "that happens in about 5% of cases", and he's right: MS can, sometimes, just stop dead in its tracks and presumably allow healing to take place. I wish we knew why.
Just one further thought: please, please let the water out of the bath before you try and stand up!! :)
Dom
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Postby Lyon » Wed Dec 05, 2007 9:39 am

Hi Dom,
Are you sure you're on the right thread? I read all the way back to the beginning and I didn't notice you pulverizing anyone......I've NEVER known you to pulverize anyone.

You hurt my feelings a little when you said I hated you though.....

Bob
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