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Joined: Jan 2002
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Hi everyone,
I'm completely devasted. My best girlfriend has just gotten told that she has MS."Multiple Sklerose". Sorry, I don't even know how to spell that right.

Do any of you know what this means and what affects it will have?? I have no experience what soever and I want to be there to give her support.
What can I do? What can I say? I have done nothing yet, just have been there to listen.
I guess this is about all I can do, or????
She's just can't stop crying and I feel so helpless. <img border="0" alt="[Teary]" title="" src="graemlins/teary.gif" /> <img border="0" alt="[Teary]" title="" src="graemlins/teary.gif" />

I'd be gratefull for any suggestions and experiences.
bb

Joined: Apr 2001
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I'm sorry about your friend, BB. <img border="0" alt="[Teary]" title="" src="graemlins/teary.gif" />

Growing up, our public school system used to participate in the "MS read-a-thon" to raise money for research.

MS is a disease that attacks the nervous system. It usually starts with a little twitch somewhere, and then progresses from that.

My former pastor was diagnosed with MS many years ago. In his case, it affected him at an alarmingly rapid rate. It was so sad. To see this once vital and active man, having to use a walker, and eventually even unable to use stairs (not even the one step up onto the altar! <img border="0" title="" alt="[Frown]" src="images/icons/frown.gif" /> ).

Multiple Sclerosis. I think that's the spelling.

Here is a link for you:

www.mssociety.ca

I hope you can get some answers there.

Take care of you and your friend.

Karen

Joined: Jun 2002
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My brother-in-law had multiple sclerosis, and at one time they thought my wife had it. MS is an autoimmune disease in which the immune system attacks the "insulation" of nerves, leaving scars.

It is a disease more common in women than men. It usually strikes in the prime of life and occurs much more frequently in northern climates.

MS can take a variety of courses from mild to severe. This is part of the difficulty of being diagnosed--one doesn't know how bad it will get.

But the National MS Society can give much better information than I. Here's the link to their Web site:

http://www.nmss.org/

Best of luck and best wishes to you and your friend. I know what you are going through. I've been there.

QM

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BB - my girlfriend has it - she has had it for about four years - and yes in the beginning it was quite devasting - she is a hairdresser and her hands were affected but then they found the right medicine for her and now she has been in remission for awhile - then a couple of months ago at a routine exam they found something in her brain - a spot due to the MS - and her options where either do chemotherapy or wait a couple of years and try an experimental drug - she opted for the chemo - but she is living her life normally - it affects different people at different rates - some can go into wheelchairs almost immediately and others it takes years and years before symptoms get worse - Hopefully your friend will find the correct medicine and get into remission - I know with my friend she was probably 31 when she found out - she didn't want anyone to treat her like she was sick - so basically I am still her friend the same as before just everyonce in a while I will ask how the MS is going and is there anything I can do - she wants to live a normal life - and right now she is?? But that was well after the initial shock was over - just be her friend the same as before...

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Thanks alot for the information.
This sounds so terrible. <img border="0" alt="[Teary]" title="" src="graemlins/teary.gif" /> <img border="0" alt="[Teary]" title="" src="graemlins/teary.gif" />

They have found a "spot" in her brain and they are now doing further tests. She will be getting "brain water" examined and they will be taking (gosh my english is terrible) a fluid out of her back bone. I don't know the word for that.
She is still very young (28) and just had her 2nd baby. <img border="0" alt="[Teary]" title="" src="graemlins/teary.gif" /> <img border="0" alt="[Teary]" title="" src="graemlins/teary.gif" /> Her legs are already starting to loose their feeling and a little while back, her face felt one-sided. (she was loosing the feeling on the left side of her face)

So I will be there for her and I will listen to her when she needs someone to talk to. I feel so terrible because I have never in my life known anyone that is so positive and sparkly like her.
She is always laughing and always into fun things. She is super, super active and always on the go.

Thanks to all of you
bb

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Dear BB,

I have known a couple of people with MS who lead pretty normal lives. The course of the disease is pretty variable so there is reason for hope.

About the extraction of cerebral-spinal fluid--it really isn't that horrible. My H has had it done. He has a condition where too much fluid builds up in the brain and he was going to go blind because of it. They drained off some fluid through his spinal column and put him on a medication. He felt like the procedure was nearly painless. In fact, he dislikes the medication enough that he wanted the older treatment of draining fluid every month but that doctors won't agree to that. About the worst that can happen is a severe headache for a few days, pretty much the same thing that can happen when a woman gets an epidural during labor.
She will need a ride to and from the hospital that day and to be able to lie flat and rest for a few hours after she gets home. Sounds like that would be a way you could help her.

MJ

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Hi BB. I think you've gotten some good info so far.

My experience (my brother, an aunt and a close friend all have MS) is that for some, the symptoms are painful but annoying, but for others, it is extremely fast-moving and debilitating. So, the good news is many people are able to manage their symptoms with a more-or-less normal life. The bad news is others aren't and there is no way to tell which group you fall in.

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Hi BB,

I'm sorry to hear about your friend. I know it's a very scary thing to deal with because I was diagnosed with MS almost 3 years ago.

MS is an auto-immune disease that attacks the central nervous system by causing deterioration of the myelin coating of the nerve fibers. There are different types of MS and a neurologist can diagnose the type your friend has. It's diagnosed through MRI and a spinal tap. But are basically pain free.

I have been in remission for over 2 years now and the only symptom I still have is numbness and tingling in my fingers (along with anxiety I experience before my weekly injection).

There are several drugs on the market that can control relapses and we are well on the way to finding a cure.

Several online sites have answers to questions related to MS. One very helpful site is MS Active Source

If I can answer any other questions for you, you can email me at tinydancer_mb@yahoo.com.


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