What I hear...

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What I hear...

Postby tealover » Mon Sep 13, 2010 10:47 am

Hi. I'm new here to ThisIsMS, but I was diagnosed in 2005. Like many others my symptoms were years before my diagnosis.

Well anyway, I am having one of those times where people really hurt and anger me because of their judgment on me for not taking MS drugs. What I hear(literally or passive aggressively) as reactions from people is that I'm either being irresponsible, weak, afraid, stupid, uneducated, or have a bad attitude because I won't take them. From my research and my experience it is better not to take them. I don't tell anyone else what to do, but haven't found a forum that allows me to talk to others who take the natural approach without being attacked by those who don't. It is so hard to be so unvalidated all the time.

Does anyone feel the same?
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Postby welshman » Mon Sep 13, 2010 12:16 pm

Hi T/L, my Wife was diagnosed in 1997, though like you she had the symptoms for a few years before that - things not going right, you know what I mean. At the time, she was told that her symptoms were quite mild, and that she probably didn't need to go on the heavy duty drugs. Since that time, the medical opinions have changed to the view that once the disease is dx'd it shoud be immediately "attacked".

In any event, she has taken no drugs other than an anti-depressant, she was taking pills to help with fatigue, but they were a waste of time and money, she takes pills at bedtime to reduce the number of bathroom trips (again not sure if they are as effective as the Doctor seems to believe), she has been taking a good dosage of Vit D (4000 IU's daily), and she takes a multi-vitamin each day. Her MS went from a mild R+R to what became SPMS in 2007.

Would the use of CRAB's or something else have prevented that progression, we'll never really know, however it did seem that maybe the medical advice of the Neuro and our Family Doctor had in fact let her down !!!! It was not until I began reading the various topics here on TiMS that it became clear that maybe the heavy duty drugs being prescribed might not have helped, that they might have only caused more problems than actual benefits.

I know there will be some on the TiMS site that might comment on the following but here goes anyway:

Since hearing about CCSVI, I have done a lot of research on the web into the theory, the procedure, the possible benefits as well as the potential downsides. I used to be in a position where research was needed to make decisions, where one had to analyse risk and mitigate it, and I now strongly believe that CCSVI is something that has the real potential to ease the symptoms of the disease.

I do not see it as a cure, that is still somewhere down the road, but it seems to be part of this disease. Because of this I am taking my Wife to be treated, she fully understands the situation and wants the treatment with the hope that it will at the very least stop the progression.

So T/L you are not alone in not taking drugs, though yours was by personal choice and for that you should be applauded. Without taking them you too will never know if they could have done any good, but you should also know that not taking them certainly won't do any harm at least to your system !!

All the very best to you:
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Postby tealover » Mon Sep 13, 2010 1:06 pm

Hello welshman,

I understand and respect your point of view, but really didn't want yet another person telling me what I already know about MS drugs. There are so many forums for people who take MS drugs and none that I know of in all my years, other than this one for the natural approach. I was hoping to not have to read yet another reply like yours and instead get some real support from like minded people on the natural approach. You have the support of so many people on this topic for traditional therapies. Did you need to do to me exactly what I have been having are hard time with? Even though your response has only added to my pain, I understand you have pain too and wish you and your wife the best. This is why taking a chance on online support is so not worth it and can only make matters worse.
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Postby welshman » Mon Sep 13, 2010 4:41 pm

Excuse me for possibly misreading what you were saying: I certainly do not have a problem with your attempts at a natural approach. I was only saying that my Wife did not take CRAB's but that IMHO CCSVI might well be an answer.

Trust you'll get something better input from another source.

Might I suggest Direct - MS where they have significant info on diet and other "natural" supplements, then I believe "Jimmylegs" also lists a variety of sites suggesting dietary and supplementary info.

All the best, just dont get down on yourself (or other people for that matter) for your / their opinions.
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Postby jimmylegs » Mon Sep 13, 2010 4:47 pm

hi tealover i hope you are clear that welshman was commiserating with you followed by opening a door for you to potentially explore newer non-drug options like ccsvi testing and therapy. it is a surgical intervention not a drug. if you already knew this i beg your pardon.

in my first days post-dx i was on track for rebif but read enough beforehand to decide against it. i have only ever used dietary change and supplements for my ms, and you will find many here that also do so, regardless of whether that is their sole treatment, or one used in combination with drugs and/or surgical approaches.

have i ever gotten flak for not taking traditional drugs? honestly, not that often. have i been teased for my (to date) unfailing nutritional approach? yep. enough to tire of the teasing? nope. because it works and i get more pleasure out of helping people than distress from the skeptical.

i think you'll find that TIMS is by and large (if not so much these days as previously however..) a tolerant forum respectful of all views.

welcome and happy reading!
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Postby tealover » Mon Sep 13, 2010 6:13 pm

welshman, I did not at all get down on you for your opinion. I told you directly that I respected it. I simply was saddened that I was looking for direct support on a specific topic from people who use the natural approach which is what I thought this specific forum was for.

jimmylegs, I'm glad you haven't received much flak for not taking traditional drugs. This is not my experience. I hope you too understand that I am tolerant to what others want to do or say as I directly stated that in my first post. I was hoping for a place to share my feelings about the intolerance I have received. I guess I will keep looking for gentler, more open forums.



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Postby jimmylegs » Mon Sep 13, 2010 6:39 pm

tealover,
i think you may potentially have misunderstood both welshman and myself, but that is your prerogative.
wishing you the best,
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Postby elyse_peace » Mon Sep 13, 2010 10:06 pm

tealover (me too! the tea, i mean!)
i was lucky. the neuro who diagnosed my ms advised me against the drugs, saying the side effects are terrible. it was '98 and the ms society hadn't started pushing dmds yet.
On the advice of a naturopathic doc, i started taking supplements.
I was doing pretty well, but, due to swallowing difficulties, I stopped taking many of the pills. i've deteriorated since.
a friend with ms was very happy on Avonex. formerly a lawyer with a practice, she is now in an assisted living facility. drugs don't necessarily keep the disease under control.
good luck. and don't let anyone push you around. you made a decision. if people disagree, don't let them make it YOUR problem.
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Postby Algis » Mon Sep 13, 2010 10:41 pm

Sorry if I'm hi-jacking this thread but:

@Elyse: have you tried to dissolve your supplements/meds in a little water? I had problems for a while swallowing bigger tablets (that problem disappeared - probably thanks to LDN) and my wife crushed them and reduced them in powder; a little water and ... Voilà!

Be well :)
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Postby jimmylegs » Tue Sep 14, 2010 5:20 am

elyse when i had issues with my throat i found magnesium helped (you may already be taking it but if not, it's a thought). there are a variety of powdered magnesium products out there but algis' suggestion works too! [/hijack] ;)
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Postby elyse_peace » Wed Sep 15, 2010 3:04 pm

Algis & JL -
Thanks :) My friend suggested crushing the pills from the beginning, but I countered with my usual exclamation of YUCK!! :D
I've had pills get stuck in my gullet, and when they began to dissolve, I found the taste unpleasant. But I have learned now that unpleasant is relative. As in, "Which is more unpleasant? Pills you can taste or becoming more ill?" :D
regards, Elyse
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Postby jimmylegs » Wed Sep 15, 2010 4:25 pm

go for the pre-powdered stuff then EP :) such natural calm.

although i do like a hard pill for magnesium 9magnesium glycinate) these days.

you could still get some benefit from natural calm powdered magnestium citrate. as long as you can swallow liquid, you're set!
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Postby elyse_peace » Wed Sep 15, 2010 9:50 pm

jimmylegs,
thank you again, :) although I'm afraid we've really hijacked tealover's post now.
which makes me ask: tealover, how are things feeling today? I hope this conversation has at least made you feel like there is some company out there/here. that is what I find great at this site. all sorts of different points of view. :) have a good tomorrow.
peace, elyse
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