Keri-
I'm with Snoopy - I hate that phrase too! It's a nice sentiment, but MS doesn't have you till it HAS you.

Here's a cyber hug because I know just how hard it is in the beginning. I was a total mess for the first 2 years. Felt like my life had been stolen right out from under me and that my brain was a ticking time bomb. A few more years later.....and I think I'm doing ok. The biggest part of getting ok with MS was participating on these boards and seeing lots of other folks having a good time despite their MS (oh yea, and a good therapist helped an awful lot too.)

Be kind to yourself right now, it's a lot of adjustment to make. It's ok to be angry, cry, depressed, whatever - just try to get it out so it doesn't control you. Look forward to seeing you around here!

Keri,

I am so sorry that you have to go through this. I hate that saying too. I want to throttle people who toss it around.

For me, dealing with this comes in spurts. I'll think I have a handle on everything and all of a sudden it's like I was Dx'd yesterday. (Latest icky reminder: MS Walk) I think things like this have to be accepted/digested/assimilated/whatever in pieces. It's been well over a year for me and I'm still waiting for the "Sorry, made a mistake. Here's your life back" phone call.

Hold tight to your friends. Mine have been invaluable through all this. If you want to talk about anything, PM me.

Hey Keri!

You did exactly what you needed to do. Come here and let it out.

That MS doesn't have me phrase is so trite. That's one of my pet peeves is people who give trite answers to some very difficult questions.

I was dx'd over 5 years ago. The first two years for me was very hard. But I've learned a lot of things. I've learned things about me and things about other people, friends, friends I thought were friends and family.

Some things were good...and some were bad.

Here is something I've learned and it's not a trite answer. It's a realistic answer. MS has taught me that control is an illusion. The only control we have is our response to people and situations.

Other people, healthy people, have the luxury of living in that illusion. But that's been stripped away from you now. You're left bare and exposed. You have a different reality now. This reality requires someone that is not necessarily always strong or courageous but someone who can roll with the punches.

Other people, healthy people, can make plans to do such and such on such and such date. All our plans are tentative. Depending on how we feel.

You are going to learn how to adjust to this new reality. The illusion has been stripped away from you. I compare it to the Matrix. When Keanu Reeves swallowed the red pill. Go rent the Matrix and watch it. You'll see it in a totally new light now.

In the Matrix they fought with their mind...not with their body.

We're all here for you. This is a great community. Please PM me anytime.

HUGS AND KISSES

Kim

(((Keri)))

I'm glad you found this place - not glad for the reason but you will find tons of support here - and lots of wonderful people. They'll even make you laugh when you think you can't!

I was sort of blindsided by my dx, too. I had double vision which seemed to get worse and worse until I was totally disabled by it. It took a couple of weeks but I finally got the MRI and that showed without a doubt that it was MS. I was relieved, though, because I had done a lot of research on the Internet and found all sorts of worse things - so, in a sense, I was relieved by my dx (I know, sounds crazy).

It's easy to get overwhelmed at first - so many questions, all kinds of new things being introduced, becoming hyper-sensitive to any new symptom or feeling. It gets better - it really does - and you will learn what your new "normal" is and adapt to it. I didn't think I would but you do. It's amazing what our minds can adapt to.

This site is full of wonderful resources and people who are so gracious, helpful and compassionate. I truly hope you continue to post here and get to know everyone. You're not alone - even though sometimes I'm sure it feels that way - and there is always someone here who can relate to whatever you're experiencing on any given day.

Take care - and keep posting!

Keri,

Like you, I was a quick diagnosis. I actually laughed. I was of the mind that it was a much better thing to have than a brain tumor ( which was my first thought)

You learn to take it one day at a time. You go through the stages of grief, anger, denial, and acceptance. Then you move on with life!

There will always be someone here who has been through something like what you are going through. Just come on in and rant when you need to.
Give to others when you can. Ask questions when you need to. Learn as much as you can.

Take time to smell the roses too! They are still there!

[QUOTE] I actually laughed. I was of the mind that it was a much better thing to have than a brain tumor (which was my first thought) [QUOTE]





Me, too! I had done so much Internet research that I had self-diagnosed myself with a brain tumor and was scared to death! MS was my "preferred" diagnosis and that's what I got. It's amazing the things we end up being thankful for!

yeah, me too...

the MS diagnosis was actually sort of a relief, as the first neuro said "Guillian Barre' or rapidly ascending polyneuropathy" or some-such polysyllabic jargon.

terrified me, that I might soon be in a hospital bed, paralyzed, and having trouble taking a BREATH.

I was just 3o, with three young children, and a single mother, living FAR from family, and not yet made many friends in my new neighborhood, when Optic Neuritis and partial blindness struck, out of the BLUE... with horrid headaches.

"We don't know what it is, just have to wait and see...."

a few years later, my feet went numb, and that numbness spread up and Up and UP.... and that's when the doc mumbled the stuff about Guillian Barre'

oh yeah, and MS really DOES have me! (another person mightily PEEVED by that phrase, checkin' in!)

welcome to NeuroTalk, Keri... and feel free to lean on us... we understand how ya feel.



PS: next week will be 20 years of having MS, counting from the ON in '88.

Keri,
You have come to the right place, we are all here for you. There are so many wonderful people, all you have to do is give a shout and someone will be ready to greet you with a hug and a shoulder to lean on. I will keep you in my prayers and if you need to vent or just want to chat feel free to PM me.

Susan




*I'm another one that hates the phrase MS doesn't have me....like h*** it doesn't!

Hi Keri,

I can empathize with how you feel right now. Nothing makes sense, you're completely overwhelmed and there isn't an end in sight.

We've all gone through this at some point in our disease. You were totally blind sided with the MS diagnosis. Ty might be a good med for you.

I would also suggest that you find a local Psychologist to talk to. Nothing like letting it out to someone who will listen and help you through all of this. It's well worth the time and investment.

Many of the questions you ask have no answer. We are all different in how we are affected. You've just had all of this "dumped" on you and all at once. No time to mentally prepare and adjustment to the diagnosis will take time and patience.

Know that we are all here for you no matter what. We're all concerned for you and want to support you any way we can. Ranting here and putting it in writing is a great therapy plus you get feedback from people with the same experiences.

You will be going through the same seven greiving stages as if you experienced a death in the family close to you. Reseach this and be prepared for it. You're NOT alone!

I woke up this morning not knowing if anyone would've responded. I know my post was a "downer" (probably to some anyhow). But there were many responses!



You all have such great things to say - and for me to think about and hold onto - so THANK YOU so much. And I'm glad you pretty much thinkt hat statement about MS doesn't have you is complete crud at times. The MS totally has me when it wants to. When it tells my brain lights out - it's lights out - and I can't move - I'm down.

I just called the doctor - and said I wanted to start the ball rolling for Tysabri NOW, I don't want to wait - and asked if there is anything else I can do for the symptoms.

Does anyone know how often one can do a steroid treatment? Funny, I tried finding an answer on the net about it - but haven't....but maybe I don't want to find it - for fear it won't say what I want it to! LOL

I've heard that it can take a couple of years for things to start to feel real and to adjust to the dx. Sheesh - it's only been 5.5 weeks - and seriously - this is ridiculous already!!

When I found out - so many people popped out of the woodworks to say they all knew someone who had MS (the math doesn't add up to me - since they say only 400,000 people here in the US have it - and I'm in the US)...but anyhow, they all know someone who has it who is doing so wonderful, blah blah blah....and there I am laying in my bed hooked up to an IV...and do I want to talk to this person. Um.....NO.

Not sure how talking to your sister's friends cousins aunts boyfriends mother who has MS who climbed Mt. Everest is going to help me! Again - one of those "MS doesn't have me" - besides, I'd probably only come to find out that she didn't have MS, but some other random disease anyhow!

My thing is - b/c this disease doesn't follow any rules - hearing about someone's story before I know what mine is going to be - doesn't necessarily help me! The doctors gave me a crap prognosis. Of course, like many have said to me - "How the heck can they know?" - good point. I wish I could hold onto that thought - but their words are still stuck in my head....probably fell into one of the holes up there and can't get out.

I just wish I knew how to get thru this exacerbation (which seems like a funny word for my first episode!)...but anyhow, am I just sposed to stay in bed until I feel better - is going out and doing things going to make it worse? How do I function? Sometimes I'm able to get one or two things done before I need to completely pass out (and that's with 400mg of provigil!!)....but I was feeling great on Sunday morning...went to brunch with friends...got in my car afterwards - and couldn't move - I was SO tired - I couldn't fathom driving. I had to sit in my car for 25 minutes - just wishing I could get myself home. It was awful. So how do I function thru this? I live alone. I don't have family. I only have a few friends - who are already burnt out (for a while I couldn't drive - so they did that - at least now when I go out - I can drive if it's daylight - for the most part). I just don't know how I'm sposed to do this. Neuro told me three weeks ago that the exacerbation should only last a total of two months from onset. Then I read on here and other places, that it could even be up to a year!! Shoot me now! (why is there no lil smiley icon with a gun to its head? lol - kidding)

So - how do you do it?

(and by the way - not only do I have a psychotherapist - I am a therapist myself)

~Keri