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Old 02-22-2008, 10:32 PM #1
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Default Day 2 of how am I supposed to live

Yes, another one bites the dust to MS. I'm 46, sep. for 2 years, 1 - 6
year girl and no other family or friends. This all came out of the
blue for me. I guess I've had symptoms for sometime, but really didn't
pay any attention to the numbness... One 1-31 I started falling
everywhere, on 2-1 it got worse, on 2-21 I stood alone and read the
mri report before going to my 3rd nuro. appointment and being told
that I had a severe case with multiple lesions. Of what I can tell
5 of an uncountable number are in places that control everything
from mood to the entire motor function of my body. I never dreamed
this would happen to me. I don't know how any of you have learned to
live with this. How does anyone live knowing any second they could be
turned into a vegetable? I've read many of your stories but have yet
to find anyone just diagnosed with so many lesions. Too many to
count?? I'm sick of the word multiple. I'm sick of this pity party and
really don't mean to be putting it on you. But, you are all I have;
thank you for being here, and thank you for letting me rant.
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Old 02-22-2008, 11:02 PM #2
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Hi Sheena,
Welcome to NeuroTalk, I'm sure you'll get to know many of the great group here.
Hugs for you and daughter.
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Old 02-22-2008, 11:10 PM #3
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Sheena, I just wanted to welcome you. You'll find tremendous support here.
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Old 02-22-2008, 11:21 PM #4
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Default Too many lesions to count...



I, too, was diagnosed out of the blue...right side of my face went numb on December 22....thought i had pinched nerve near my jaw. Had double vision on Jan 2. Saw neuro on Jan 4 - had MRI - he called two hours later to tell me I had MS. Out of nowhere.

No neuro will give me the count of lesions - "too many to count" - and "at a certain point we no longer count" - those phrases echo through my ears constantly. I've also been told that it doesn't necessarily matter how many lesions - but where they are. Of course, mine also aren't in good places (as if there are "good places" for there to be holes in your brain!?).... Several of my lesions are also larger than 1cm and 1.5cms. I guess most lesions range from 3-9mm in size. 1.5cm doesn't sound too good to me. Lesions aren't like diamonds...bigger isn't better.

It was seven weeks ago today. I've just finished my second round of i/v steroids.

I just turned 32 last month.

My neuro said it is uncommon (though not unheard of) for it to come on this out of the blue - but that when it does - it is usually bad and aggressive. I dunno. I'm still in disbelief myself. Keep telling myself this can't be happening - keep ignoring the walker sitting in my living room...the shower chair in my bathroom....the handicap placard in my car (for when I'm not too dizzy to drive).

Everyone tells me that it takes time to adjust - I guess I can tell you the same thing - but I dunno....I think that's my new phrase - I dunno. I don't know much anymore.

I'm sorry you're going thru this - but know you're not alone - I, too, have many lesions, plaques, holes...black spots - I saw the actual MRI pictures. Still have nightmares from it.

~Keri
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Old 02-22-2008, 11:31 PM #5
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Hello, Sheena and welcome to NeuroTalk.

I am very sorry you have this disease

There are no rules for MS - you can have alot of lesions and very little disability or just a few lesions and be more disabled. Lesions do not always tell the story of this disease or how you may or may not feel at any given time.

It's really too soon for your neuro to know your MS is severe. It takes time to see what the disease does or doesn't do.

The most common "type" of MS is relapsing/remitting (RRMS). You can be at your very worst (exacerbation/relapse) wondering if this is it - is this what my life is going to be like. Then over time (possibly months) you start to notice symptoms aren't as bad or your walking a little more/better - remission is happening.

Remission doesn't necessarily mean you are back to your old self. You could still have symptoms and possibly some difficulties but your not as bad as in the begining.

When I was diagnosed (dx'd) and for many years afterward I worried and wondered about worst case senarios. It's been 22 years and my worst fears have never happened. Now, I'm just thankful for what I do have - my husband of 26 years, our children (16 & 18) who were born after my dx and my life.

Hang in there, Sheena and talk to us - we understand.
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Old 02-23-2008, 12:35 AM #6
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Hello Shanna, welcome and welcome to the 'rant room'. I'm sorry you had to find us this way but we are a great group of people here. A lot of us have been together for 10 years or more. I will never forget a wonderful woman I met at a MS social gathering who was totally confined to a electric wheel chair. She was the most vibrant woman I have ever met. Have you had any steroids yet? If not, they will partially help, some or a lot, get you over the hump. Good luck and come back.
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Old 02-23-2008, 01:00 AM #7
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Hi Sheena!

I was dx'd almost 6 years ago.

This is a great place to come for comfort and understanding.

I'm so sorry it doesn't sound like you have a lot of support. You sound like a 'Do What Needs to be Done' woman.

This disease is very unpredictable. It really takes time to see what your body is going to do.

Welcome to the boards.


Kim
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Old 02-23-2008, 01:06 AM #8
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Hi Sheena,

One of the very first people I met on the MS boards, several years back, was a wonderful lady who had a 13 yr son who was given a MS dx. He had in excess of 100 lesions, on first count.

He tried various medications, and in the end his mother got him onto an alternative treatment. He is now about 21 yrs old, has finished school, he got into college, and hasn't had any big problems along the way.

I had my first attack in 1991, and was paralyzed. The odds were 66% that I would be permanently disabled in a big way, and even a large chance I would be bedridden from the get-go. Those are the odds they gave me. I recovered and went another 12 yrs before I even experienced another attack. I recovered from that one too.

Don't let anyone tell you, at this point in the game, that you are not going to be ok. They just can't possibly know that, like Snoopy said.

Cherie
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Old 02-23-2008, 01:25 AM #9
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Sheena -

I am trying very hard to listen to the things that Snoopy and Cherie say.

Of course, as we read - everyone's course with MS is very different - and there is no way to predict it.

I have my moments when I want to wave the white flag - but all in all - I walk around telling off the doctor (in my head) - and have no plans of "following" his idea that my MS path is progressive or aggressive. He can't know 100% - no one can - he can know some things from my symptoms and how I present - but I'm fighting this head-on and not laying down and taking it. I trust my doctor and his experience - but I also need to fight - and he knows I'm coming from that stance - and he is standing with me.

Of course - in 10 mins I will probably change my mind and feel despair again. LOL.

I go moment to moment - and dont even know what that means most of the time.....kinda hard to fight this and think about the future when you're in a "flare up" for 8 weeks now. Hard to think that you might go into remission when it's been 8 weeks - but it happens. Would love to feel the right side of my face again.

~Keri



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Old 02-23-2008, 03:07 AM #10
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welcome to the club, dont let it freak u out it is a illness that can be worked around, and on here u will find many answers, dont be afraid to ask there are

no silly questions, keep a journal of how things go each day or everyother write down your questions you have for your doc's, and try to keep your

humor and spirit, I mean, sorry if this comes out wrong, but when i have fallen on the ground i always look around to see if there is something i can pick up while i am down there.

one day one step at a time
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