Doubt!

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

Postby Wonderfulworld » Wed Dec 05, 2007 10:25 am

Chris55
I think that your daughter has obviously done superbly and fair play to you, and her, for all the improvements, it sounds truly terrific.

A teensy, tiny word of caution though. You asked on an earlier post in this thread that there is no way an MS specialist is going to make a statement that bold (MS has stopped) if he is not certain of what he is saying - but one did to me and it was patently false. I believe the neuro believed what he was saying, but he was wrong. They do get it wrong sometimes. I have been told by different neuros that I have Benign, RR and worsening RR-MS - so who is right?

I think that the disease process(es) are all so individual that whatever is working for your daughter is obviously doing her the world of good at the moment, but that MS is a nasty piece of work, and it can come back to bite you after pretending to be gone a long, long time.
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Postby TwistedHelix » Wed Dec 05, 2007 1:30 pm

Bob,
I was talking about something that happened quite a few months ago when I was attempting to make a few lightly sarcastic comments about someone I believed to be questionable, but it was one of those things that came out all wrong and sounded a bit like an attack on those trying nonconventional approaches to this disease. I don't know if that's the same occasion Chris is talking about but I've always felt bad about the way it sounded.
I'm afraid my pulverising days are long gone, but when I was young and strong and fit I have been known to crush an entire grape in fury!
I'm sorry if I hurt your feelings: if you want to know what I really think about you go and count your pet bunnies and check the pot that's boiling on the stove…

Chris,
I wholeheartedly support what you're saying: none of us knows what will help us because science so far has few answers, so unless there is an obvious drawback to a regimen, (whether it's financial or physical), why NOT give it a try? I'm sure many of us here have altered our lifestyles in some way – some drastically, some not so much – and I suppose that all counts as " trying something" in order to find our own personal answer, the sad thing is that, unless we are part of a controlled trial, there is no way to know whether it will be valid for other people or not,
Dom
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Postby robbie » Wed Dec 05, 2007 2:18 pm

unless we are part of a controlled trial, there is no way to know whether it will be valid for other people or not,



because of the way ms is the trials are misleading to
Had ms for over 19 years now.
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Postby Lyon » Wed Dec 05, 2007 2:39 pm

robbie wrote: because of the way ms is the trials are misleading to
Until researchers identify something absolutely specific to MS...100% of the time and 0% of the time in the general population, the entire situation surrounding MS is going to remain misleading.

Twisted wrote:I'm sorry if I hurt your feelings: if you want to know what I really think about you go and count your pet bunnies and check the pot that's boiling on the stove…
I have no idea what you're talking about but it sounds like we're buddies again!

Bob
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Postby MattB » Wed Dec 05, 2007 9:51 pm

Lyon wrote:Until researchers identify something absolutely specific to MS...100% of the time and 0% of the time in the general population, the entire situation surrounding MS is going to remain misleading.


That's all I seem to get out of everything that I've read.
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Postby Chris55 » Thu Dec 06, 2007 7:59 am

Hey Lyon--your points are very valid and well received. Guess the thought that "my" opinon would have any kind of influence on ANYONE never entered my mind!! (I am but a humble person....) That someone might make a decision on their MS treatment because of something I wrote...well, that's scary and something I would NEVER want to do! Thanks for your insightful perspective!

Robbie--I sense that some folks think I am the perverbial "Mom in the rose-colored glasses". Nothing could be further from the truth! I wish I could be that way but I am the die-hard give me the facts, ALL the facts, sir! I know I have never used the word "cure"--never. And I never will. I have what are considered 4 autoimmune diseases myself (nothing like the severity of MS.) Two I can successfully control (stop) with diet/supplements--this for the past 35 years. Am I cured--never.

My only point was to share something that my daughter found to be very helpful for a small price and something that would do no harm. To me, it is no different than those on here who post diets, supplements, LDN, ABX that have helped them.

And repeating, we none of us knows what our futures hold. With MS, it is difficult NOT to think about all the possbilities, none pretty. I simply choose not to live that way. I would rather take the good as it comes and survive the bads when they come.

Like Santa Claus, I still believe in miracles and when they come, I celebrate/express thanks with a giant mental parade!

It's like my dog...the older he got, the more well-meaning friends/family kept "warning" me to be prepared for THE day. How the hell do you do that??? I decided to enjoy every extra day we were given together. He is now 18 and my cat is 20. Cheap food and love!

Peace all! Chris
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Postby Lyon » Thu Dec 06, 2007 10:12 am

Chris55 wrote:Hey Lyon--your points are very valid and well received. Guess the thought that "my" opinon would have any kind of influence on ANYONE never entered my mind!! (I am but a humble person....) That someone might make a decision on their MS treatment because of something I wrote...well, that's scary and something I would NEVER want to do! Thanks for your insightful perspective!
Hi Chris,
You haven't done anything that I haven't done myself....MANY times regarding my helminth parasites, although I'm trying to avoid whether or not adding them will eliminate autoimmune disease and trying to focus on their loss having led to the autoimmune diseases.
I have what are considered 4 autoimmune diseases myself (nothing like the severity of MS.)
I admit that MS is heinous, but I guess how they compare to MS depends on which four autoimmune/inflammatory diseases you have. My brother has Crohns. It's different than MS, but I can't say that I'd rather have that than MS.
A few days ago we heard from a lady that my wife used to work with. She says she is going on disability because of fibromyalgia. I didn't know much about it, so I looked it up. Chronic pain, in addition to the symptoms associated with MS and the others (fatigue, joint pain, raised chance of "acquiring" other autoimmunes).

I've said it before, considering how bad one autoimmune disease is, I can't imagine being "blessed" with more than one.

Bob
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Postby Chris55 » Thu Dec 06, 2007 10:46 am

Wonderfulworld--thanks for your thoughts. I don't think I expressed myself well about the "MS has stopped" doc statement. The emphasis was on her improvements NOT being anecdotal because of the concrete (MRI) findings combined with doc's assessment.

Again, we all know there is no cure, plain and simple.
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Postby MaggieMae » Fri Dec 07, 2007 7:52 am

Chris55,

Quit apologizing. Your daughter is doing great and you should celebrate. I want/need to hear about the many different treatments others are using. Knowledge is power. If Tim hadn't created a web site about Tovaxin or a Revimmune forum hadn't been mentioned here, many people would not even know about these treatments.
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Postby Chris55 » Mon Dec 10, 2007 12:14 pm

MaggieMae---

YES MA'AM!!!
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Postby MaggieMae » Mon Dec 10, 2007 1:12 pm

Smile :D
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a thinking thought

Postby notasperfectasyou » Mon Dec 10, 2007 1:16 pm

Sometimes we need to say stuff like this and I'm glad this thread is here. Although I think I have an answer, that don't mean everyone has to agree with it. I know a guy at church who was telling me about a local trial with an oral med. I told him about abx and he was dismissive of it.......Just as I was dismissive of his idea.

It's human nature to go though these feelings. As the story goes Christopher Columbus was nearly done in by mutiny because his crew was running out of food. I think it's a bit like hoping there's going to be a cure soon. You wake up and see nothing but water for days in a row and somewhere along the way you gotta question whether the guy with the telescope knows what he's doing. This might be a bad analogy, but ....

My son gave up on the Steeler's last night when the Pats got ahead 24 to 13. While I know it was likely that the Steelers were going to lose, I wouldn't give up on them and I'd still watch the game. Hope is the cousin of chance. Coming up short and being disappointed happens, sometimes in life altering and extremely disappointing ways. It's ok to feel the pain and unhappiness. It's even ok to feel completely beaten. It's ok to cry in your beer sometimes. I'll just say that somewhere along the way, somehow we gotta wake up the next day and do the best we can.

I have a lot of skeptisizm about the drug companies, the money, the medical establishment and the process for adopting and accepting change. So it's tough to know at any given time if our hopes are well placed or if our money is bet on the right team. But, you can't win the lottery if you don't buy a ticket. I'd hate to be a Dolphin fan this season, but I also hope that some Dolphin fans stick with their team and realize that folks are working on making it better for next season, if not the next game. Whatever you do, don't stop coming here to TIMS - we are here because we have hope, albeit in different amounts, we do have hope. Ken
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Postby Chris55 » Mon Dec 10, 2007 4:19 pm

...and MaggieMae, I do CELEBRATE! As my beautiful, gentle son so eloquently puts it: Why, it's a miracle!

All the destruction this disease caused came out strongest in my beautiful daughter's face. She is the epitome of "life" and strength. This disease took all of that away. She had no hope!

I cannot describe the pure joy of seeing her face now. We do not live in the same town. Once she started getting well and I went up to visit, that was the first thing I saw--her beautiful face full of LIFE again!

As I have said, I will NOT live my life everyday wondering when the next relapse will come. I will enjoy every second of having my daughter back. What choice do any of us really have?

Thanks again for your wonderful words of support! Chris
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Re: a thinking thought

Postby Lyon » Mon Dec 10, 2007 5:37 pm

notasperfectasyou wrote:we are here because we have hope, albeit in different amounts, we do have hope.
Good post napay! I'm not sure that any of us have to agree on anything more than what you've mentioned and things will turn out right.
Bob
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Bob

Postby notasperfectasyou » Mon Dec 10, 2007 7:11 pm

Thanks Bob. I got real emotional writing that. It was for me as much as it was for everyone else here. Ken
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