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Old 06-01-2007, 02:30 PM   #1
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parisiancat HB User
A Question for Bearygood

Hi beary -

I've started a new thread because I didn't want to hijack the 'new to the board' thread.

I would be interested in reading or hearing about what you read. Compared to some other people's stories I was happy with the process and speed of getting a dx. But I don't know how treatment differs from elsewhere and would definitely be interested in that. I love a good controversy! There has been some media coverage here recently about the fact that there are only 16 neuros for 10,000 MS patients.

Cat

 
Old 06-01-2007, 02:50 PM   #2
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Re: A Question for Bearygood

Cat, I'm pretty sure I'm not going to be able to come up with a link that will fall into the board's guidelines but I'll summarize, and I think this should be enough to lead you to your own search -- but it sounds like you know exactly what I'm talking about already! I set up a news alert for "Multiple Sclerosis" and several items on this were delivered today -- guess you guys made international news wires!

It's basically about the European Multiple Sclerosis Platform meeting in Brussels yesterday and that at the conference, Ireland was cited as one of the most "unequal" countries for supporting people with MS along with Poland, where a very small percentage of patients have access to drugs. As you indicated, they reported just 16 neurologists regarded as "competent", 5 neurological units and 2 rehab centers , not enough to cater to 10,000 MS sufferers. Some of the other statistics for smaller countries like Iceland and Finland (more available care for fewer patients) were pretty astounding.

Now, I'm currently not on drug therapy by choice but I think one should certainly HAVE the choice if that's what they want to do.

Last edited by Bearygood; 06-01-2007 at 03:05 PM.

 
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Old 06-02-2007, 05:18 AM   #3
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Re: A Question for Bearygood

Thanks for replying. I did read about the conference.

I'm also not on drug therapy by choice, and at the moment don't really need support from an ms team, or rehab so I can't really comment on how bad things are.

Cat

 
Old 06-02-2007, 07:07 AM   #4
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Re: A Question for Bearygood

Cat, I'm curious what your plan of action is to monitor your MS and if you're doing anything at all to try to keep it at bay. I have to see my specialist in 3 months and then get another set of MRIs 3 months after that. Also trying to be healthier and add vitamins and supplements that might be appropriate.

 
Old 06-02-2007, 10:40 AM   #5
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Re: A Question for Bearygood

Hi,

I'll have a neuro check-up every six months (if I don't have another attack and continue to feel well). I don't know at what point I'll have another MRI.

I didn't want to start on medication, I hate taking drugs. I will, of course, reconsider if/when I have another attack.

I've given up smoking (except for the odd sneaky one on a night out), I've also cut out dairy, eat oily fish at least five times a week, have increased my fresh fruit and veg intake to at least 7 portions a day, and decreased intake of processed food and sugar. I'm also taking B complex, fish oil, vitamen D and calcium supplements.

I'm really interested in the role of nutrition in MS but it's so difficult to find reliable information. There are many theories and it's hard to know what to believe in. So I'm just reading as much as I can find at the moment.

What supplements do you take?

 
Old 06-03-2007, 08:37 AM   #6
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Re: A Question for Bearygood

Yup, there's a lot of conflicting information on diet and supplements. I think it's great to do research and be informed -- and it's also possible that not everything triggers the same response in everybody. That said, I commend your discipline! I think that cutting out dairy is a difficult thing for most people -- and I am one of them! Lately I have come across 2 people (my acupuncturist making it 3) who believe that dairy is not good for your body but they've all referred to the problem as that dairy products here in the U.S. are processed but if they're raw it's okay. That statement might be for "normal" people but even my acupuncturist thinks that raw dairy would be okay for me. I'm not sure I agree with that for other reasons but regardless, it's hard (in some cases impossible) to find here and if you can, it's very expensive.

I do believe it would best for me to be on a dairy and gluten free diet but at least I'm more conscious and am trying to be better about limiting my intake. I know I shouldn't even eat "real" whole grain products if they have gluten but it's at least "better" than "bad" if you know what I mean. Sugar is a little less of a problem for me. I don't consume refined sugar often but my downfall is white flour prouducts like pasta and pizza! In general, refined & processed foods are not a huge problem for me but sometimes it's impossible to avoid if I'm not at home. Also try to eat organic whenever possible -- that can also get very expensive and make you crazy but I do the best I can.

Supplement-wise I am taking: Fish oil, Evening Primrose oil, Blue Green Algae, CO-Q10, D3, Flax Seed oil, Curcumin/"Turmeric Force", Lutein/Bilberry (for my Optic Neuritis). Those are things that have been specifically recommended for MS (although I took some of these before and would anyway). I also take a multi-vitamin, Calcium w/D, E, C and a vitamin B complex to modulate Homocysteine levels. I'm still evaluating, re-evaluating and researching. I'm in a little bit of a time crunch right now but I'll post more later about some things I've found and perhaps others will chime in. Oh -- and I hear you on the smokes! We know it's not good for so many other reasons and lots of stuff has definitely come up on this for MS as well. I'm doing better in this department but so far not as well as you!

 
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