Which good books/websites can inform me about MS?

[WilliamPitt]

Basic stuff, background, causes, treatments, etc.

Thanks.

[blondie58]

1. well, there is probably more that they don't know than they do

and keep in mind that the symptoms can vary widely in each patient.

Some of my favorite sites are

the Rocky Mountain MS Center www.mscenter.org
They are unique in that they have done research into CAM's (Complimentary Alternative MEdicine)

the National Multiple Sclerosis society www.mssociety.org is also a wealth of information. They have local branches in a lot of large cities, where they have lending libraries and offer much support. They are also the ones that get the $$$ for the MS Walk each year.

A fun one- written by a guy who has MS is MS Sucks. It is written with a slight sarcastic view and also has a lot of info. www.multiplesclerosissucks.com

Basically, it is a progressive disease. They have now, disease modifying drugs, that hopefully, will alter the course of the disease, making each relapse less frequent and a little less severe. The downside is that these drugs only work on 28-33% of each person and you won't know if it works for you until it is taken for awhile. The other negativities are #1 the cost- usually $1200 or so a month without insurance and oh, yeah- they are all injectables- only taken through a shot.

Good luck and holler if you have any more questions.

[WilliamPitt]

2. Thank you so much.

[Ellen Forradalom]

3. PM ProfessorGAC.

He's very nice, very intelligent and can probably point you in the right direction.

[mopinko]

4. causes

nobody really knows, but i was raised in an industrial town that is an ms hotspot. my sister has it, i have a lupus like illness, i have a kid with chron's disease. so it is hard to keep from the conclusion that our planet might already be poisoned beyond repair.
now for the good news. my sister had an outbreak when her son was born that lasted a few months. after that she led a fairly normal life for 20 years. the bad news is that she is also bipolar, which runs in the family. she is in a nursing home at 55.
there are always stories about new drugs in the pipelines for all these autoimmuune disease. i believe there is a humab for ms in trials. they show promise.
stem cells may be the best hope. we know how that is going. once the fugure out they can use them to fix some of their broken soldiers, i predict they will suddenly a gift from the generous and almighty cloud being.

hope this is idle curiosity on your part, will.

[blondie58]

5. one odd fact about MS

is that pregnant women are usually very healthy and symptom free, but they oftentimes have relapses after the baby is born. Perhaps there is some helpful factor in the motherly hormones? I think that if we can unlock the key for one of the autoimmune diseases, we can help all of the autoimmune disease sufferers. It is also not unusual to have more than one autoimmune disease, ie: ms with lupus, etc.

[mopinko]

6. that is my sisters story.

i believe there was a study way back then that found a link between birth control pills and postpartum onset. there is also evidence for a viral link, which is also my sisters story- her mother-in-law, who lived in that same building, came down with is a couple of years before she did. this is a common story with other autoimmune diseases. i have fibromyalgia, and some sort of lupus like autoimmune disorder. it worsened somewhat when i had hepatitis a, then came out full blown after contracting west nile.
i think you are right, tho. these diseases are all part of the same puzzle. i would add that i suspect some of the increases in serious mental illness may be part of the mix. fibro appears to function very much like depression, just on a different neurotransmitter. several bipolars in my family. these things are so damned subtle.
can we spend some money on this instead of on killing people? can i have some stem cells, please?

[jmm]

7. I have an aunt with MS

When she was considering becoming pregnant her doctor, I wish I could remember his name because I know he's written a book about MS, told her it was ok for her to get pregnant but if she did she should have a cesarean because labor tends to trigger relapses.

[LynzM]

11. A similar thing happens with diabetes

Diabetic women tend to need *very little* insulin for the first week or so after giving birth... some kind of survival mechanism?

[truedelphi]

12. Oh I agree with you Mopinko - it does seem so related to two things

1) Western diet
2) Toxins in the environmnet

I met a little two year old who had MS - her family said that she was the youngest person that doctors has seen with the diseae.

But what do we expect? Preganant women are now out in the work place working - and offices are among the more toxic places to be. (Cartridge toner from printers,people with colognes and perfumes, etc) Our commercial detergents made with battery acid. Then there is the whole Febreezing of the country, lysoling and Glade-ziing. Here have some BENZENE. We took it out of the gasoline so that gas station attendants would no longer get luekemiea but we put it into personal care products so that the manufacturers don't incur the expense of shipping it off to super fund sites.

I personally knew someone whose father was being fitted for a wheelchair for his MS. The doctor noticed the man drinking a NutraSweet Diet coke from a can. Doctor said to him How many of those do you have in a day. The father said, One or two. His son said, More like five or six.

Doctor said Go home, get off the Diet drinks, and come back in six months if you still need a wheelchair.

The guy never came back - after six weeks of being off the poisons, he felt better. After six months, he no longer had what had been diagnosed as MS. True story - I know the son involved.

[fudge stripe cookays]

14. EXACTLY!

Look up "excitotoxins" on the internet. I have completely removed Nutrasweet, Splenda, all other artifical sweeteners, and MSG from my diet when I can control what I'm eating (ie not in restaurants when you can't always be sure). They're neurotoxins!

I tell all my friends whenever I see them drinking Diet drinks to GET THE HELL OFF THOSE THINGS. Then I describe how much my life has changed with this disease to a point where I think I've scared many of them enough to quit.

That crap is poison.

[mopinko]

16. your story could be perfectly true, but your conclusion

unwarranted. ms is a slippery sumbitch of a disease. perhaps he did bring about a remission. perhaps the drinks were aggravating the disease. but perhaps he will need that wheelchair in a few years, anyway. it could have remitted for reasons that have nothing to do with pop.
i think some of the worst "folk wisdom" about any disease is around diseases like ms, and there are many, that remit and relapse. most autoimmune diseases do. that is why you need long term double blind studies before you can conclude anything.
even though i opened this can of worms, i am extremely, extremely cautious about offering any suggestions about treatments or causes. anecdotes lead to blind alleys that waste precious time, which can lead to permanent damage. i demand hard science. i have seen people die from such internet "wisdom". not only die needlessly, but die painfully, outside the care of docs and hospitals, and hospice.
hard science. put your faith in it. it is the real thing.

[OhioChick]

8. Decent Discussion Forum:

Healthboards
http://www.healthboards.com/boards/forumdisplay.php?f=88&jump=Jump+to+Board

[fed-up]

9. here are a few more sites

MS World Forum

http://www.msworld.org/forum/index.php

Mult-Sclerosis.Org

http://www.mult-sclerosis.org/

MS Glossary of Terms

http://www.geocities.com/hotsprings/3468/gloss1-a.html#A

[Mojorabbit]

10. I have MS

and have had it for twenty years or so. My favorite place these days is http://www2.healthtalk.com/go/multiple-sclerosis.
If you have any questions I can help with, please feel free to pm me.

[truedelphi]

13. Thank you for posting. n/t

[bicentennial_baby]

15. You can PM me if you want to know

my experiences with it. My Dad has had it for 30 yrs.