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Joined: Jul 28, 2004 Posts: 128 Location: Michigan, USA
Posted: Sat Mar 12, 2005 9:02 am Post subject: IN A NUTSHELL
As some of you may know, or possibly recognize my "name", I've been a member here for 6 or 8 months I believe. As of recent I have spent limited time here not because I have ANY dislikes about this board. I just felt I was getting MS saturated....not a good thing. Why make this more of my life than it already is.
I have also visited several other MS forums. Seems I always end-up back here Some other sites have a confusing layout and threads are hard to follow. Ten cheers for site administrators, Aaron and others!
The reason for this post?!
I'm hoping some of you successful veterans will help me!
This site is starting to get too many threads to sort through too.
My question to you all :
Can we please start a thread / topic that just posts Successes any of you have had, whether they be "mainstream or alternative" treatments?
ALL members might benefit!
Or.........I'd really appreciate PM's from anyone willing to take the time!
I feel I'm fighting a losing battle by myself because my neurologist isn't giving me the time I deserve and don't have many choices since I live in a kinda small town in Michigan.
I currently take Betaseron........for about a year now but, I know there is more successful out there! I am not willing to take the sit back and "see how things go" approach.
I have followed Anecdote's treatment for months now but with all the additions to her threads, and the bouncing from topic to topic, even that is getting to be a hard one to follow.
Any............and all input from members would be appreciated beyond expression!
Joined: Jul 28, 2004 Posts: 128 Location: Michigan, USA
Posted: Sat Mar 12, 2005 9:15 am Post subject:
I'd like to add......my Neuro. does know his MS but my wife and I are really getting the impression he is strickly "old school" and definitely sticks to mainstream. He kinda acted(?) like he wasn't even up to date or well versed with Prostaglandins, effects different fats have, and what the largest dose of Vitamin D I could take SAFELY.
Joined: Jun 20, 2004 Posts: 1040 Location: Tennessee
Posted: Sat Mar 12, 2005 11:43 am Post subject:
Hi, Steve!
Oh, wow! This is such a hard one!
As far as MS "therapy" for disease modification goes, that is the main frustration. There isn't that much, at least that you can obtain easily from physicians. A lot of us out here have our own suspicions on certain drugs that we feel should prove beneficial and have anecdotal results that we can (and as you note) have shared, but getting a majority of doctors on board with us has proven to be somewhat difficult.
Of course, optimistically and successfully speaking, there is trial and error until you find things that can most likely provide you with good symptomatic relief. In cooperation with your doctor, too.
Have you tried that? Other than the CRABS, which you are on Betaseron (which to me, if you aren't having major side effects with it, then that's a good choice), what other medications are you taking?
I also think several of us have found that a low fat diet (and I mean COUNT the saturated fat grams! ) has helped. And of course, mild exercise, without overdoing it. And oh, not to mention, several different vitamin supplements. Plus the ever reliable stress relief as much as possible. (Although, I don't know about you, but work, raising kids, paying bills, etc. is alone enough to stress me out! )
It depends, I guess, on what specific symptoms are giving you the most trouble right now. I'm sure a lot of us would have many suggestions regarding things we have found that relieve certain symptoms (at least in our own personal experiences).
Can you be more specific about what you are experiencing?
As far as any physician experimenting too far outside the box, unfortunately, you may indeed find that particularly now with recent events that physicians may be tightening their belts a little more regarding prescribing too much "off label" for actual MS disease modification. But they should still be fairly open to helping you gain symptomatic relief via many methods.
Joined: Jun 18, 2004 Posts: 1472 Location: Bedfordshire UK
Posted: Sun Mar 13, 2005 11:44 am Post subject:
Just a quick post to say that I haven't been ignoring poor old Steve, although I didn't see this until this afternoon. I have sent him two PMs instead.
Sarah
Last edited by Anecdote on Wed Mar 16, 2005 12:28 pm; edited 1 time in total
Joined: Jul 28, 2004 Posts: 128 Location: Michigan, USA
Posted: Sun Mar 13, 2005 12:03 pm Post subject:
I will attest to that.
To clarify my meaning of this post, I know all too well how many different "treatments" have shown possible promise for countless MS sufferers. You just have to wonder how many work or is it just a "remitting" phase.
I do believe I'm going to give the Swank Diet a try. Certainly won't hurt. I'm sure it would help millions of individuals without health concerns too.
I know all too well fat intake is running rampant in the U.S. and I'm as guilty as the next guy. Without counting, I'll bet my daily fat intake runs between 75 and 100 grams/DAY!
Any experienced with Swank, I'd appreciate your input. Also, best book to guide me would be...........?
Joined: Jan 06, 2005 Posts: 52 Location: Massachusetts, USA
Posted: Mon Mar 14, 2005 8:59 am Post subject: less conventional approaches
Hi Treez -
I can appreciate your line of questioning. I am unable to take any of the CRABs and so without Tysabri I have been looking hard at other options too.
As much as I like and respect my neuro, he too does not offer anything regarding diet or supplements just as yours does not. I think he truly does not know. (By the way, I find this to be true of conventional veterinarians, in case you have animals. It's just not in their training and they go a long with what's on the market even though there is good reason to choose otherwise.)
So I see an integrative physician. She's an MD and is quite focused on diet and supplements. Perhaps you could find someone like that who would be a nice complement to what you are doing.
She recommended one book that I found helpful: "The Better Brain Book" by David Perlmutter. She also really emphasized the importance of eliminating trans fats, not just scaling back saturated fats. Trans fats get a lot of press regarding their impact on cholesterol, but apparently they harm the myelin.
Hope this helps. I look forward to hearing about anything you figure out.
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Some other sites have a confusing layout and threads are hard to follow. Ten cheers for site administrators, Aaron and others!
:
) has helped. And of course, mild exercise, without overdoing it. And oh, not to mention, several different vitamin supplements. Plus the ever reliable stress relief as much as possible. (Although, I don't know about you, but work, raising kids, paying bills, etc. is alone enough to stress me out! 
