Question! Who on our forum is in their 1st year of diagnosis?

[sllowe]

Hellooo all,

I'm having a hard time keeping my mind organized these days, imagine that, hahah

So, was wondering who on the forum are currently in their 1st year of MS diagnosis?

-Shell

[sallyrose23]

Thanks for responding. Although my MS doc did a great job of explaining and answering questions, it was so much to process that I didn't really absorb it all. I am not well educated in this area, and didn't know (until reading message boards) that is difficult to diagnose, or can take a long time. I am hesitant to look online, and just feel in the dark. I go back to my doc in July and have an MRI scheduled then too.  The infusions are only for 6 months, I guess get a big dose upfront. I am hoping that after living with the DX for 6 months then returning to the doc, I will have better questions and the ability to process what she's telling me.

I look forward to being a part of thus community. Thanks again.

[immisceo]

Hi Sally. I just wanted to offer my support. Most people have a really long road to diagnosis. Stories like yours and mine tend to be in the minority (trip to the ER, days in the hospital, every single test scoring a positive result, BANG, 'you have MS, pick a drug'.)

This is an unusual path compared to most, and it can be quite frightening and disorienting. It's like nothing at all was wrong, and with no warning you find out; nope. Something is *quite* wrong. I just wanted to say there are others of us 'wham-bammers' out there, and it's tough, especially in the first year.

It will get better. Even if the disease itself remains unpredictable, in the coming year you'll gain a measure of acceptance and the primacy of MS in your conscious, daily thoughts will start to recede a bit. (I'm two years and a bit post-diagnosis myself)

A monthly methylprednisolone infusion is uncommon (though by no means unheard of) as a lot of doctors don't like the side-effect profile for regular, continued use. But if it's a collaborative treatment decision between yourself and your doctor, I'm sure all of that's being monitored.

You're ahead of the game by reaching out to others who can relate. I didn't join this forum until last month, though I read it for a long time before then. If I'm honest, all the sincere tales of struggle to get a diagnosis that I couldn't relate to and never really hearing a story I felt mirrored by own caused me to hesitate.

I knew my fears and concerns were valid and didn't want to risk being told how 'lucky' I was to have been diagnosed so quickly. It was a very isolated time. But there are so many paths to and twists and turns with this disease, that there's more than enough empathy and good will to support pretty much all experiences. You're just at the start of this, but it will get better.

[sllowe]

SallyRose - Welcome to the forum!
I'm so glad you posted on this discussion, because somehow I missed Bubbles above!
What more can you do -hmmmm lets see, ou are treating your MS, you are taking each day as it comes and staying positive - I'd say you are doing well with what you have going on. There really is no way to predict what comes next - just have to keep on being you :)  Thanks for joining us!

Bubbles - I'm so proud of you for laying it all out - we really do get it.
If pre-MS you were the type of person that was more comfortable with knowing what came next in order to proceed - then it's totally understandable for the anger, the fear, and frustration. Really it is.

Truth is, some of what you mention may or may not happen (i.e., loss of body function), or you may get a garden variety. But, because you are treating the disease there is a possibility you shifted your odds greatly, expecially if the Rebif works for you. It's a good med, one I believe has me functioning well!  

Keep on loving your life girl - it will pull you through. And, never let go of the thought that what you are experiencing today or this month will remain forever. Improvement is possible. Keep some of that hate for the disease though, lol, that too will help you defy it when you truly need it.
THE FIRST YEAR ROTS!
(((hugs)))
shell

[sallyrose23]

I was just DX December 17, 2012. I went to the ER for double vision and dizziness, left side only affected. After 4 days in the hospital, 2 MRIs, 2 CAT scans and a lumbar puncture, they concluded I have MS. There was a lesion on the left, lower, back of my brain (not sure what this area is called). I was put on a 5 day dose of steroids and after 2 weeks starting feeling normal. I give myself daily injections of Copaxone and get a Solumedrol infusion once a month. So far I have not had any more symptoms or episodes. But I'm not really sure what to expect next.  Can anyone offer any advice? I have a very positive attitude and take each day as it comes, after all what more can I do?

[bubbles_04]

I'm in my first year still, was Dx last march/april. I knew about it around Jan, my PCP said it was likley MS... It was. It's a really tough disease I deal with emotionally. I went to see my Neuro yesterday and he noted some weakness in my left leg. I knew about it, but i hate tat he can see it too...

So before Dx just two numbness attacks (second got me dx) Since then I have had two more (I think the weakness is an attack...its new and its been longer than 1 month). I also have ON in my left eye last summer. My eye dilation is still alittle slow but it works..

I came here today because I was feeling depressed and alone after yesterday. Also I'm scared for thursday as I'm doing my first 44mg rebif shot.

FEARS
I'm afraid of losing bodily functions, so afraid this tiny little extra weakness has set me off.... I don't think I'll ever be ok with it. I'm trying my best to do everything I still can now and appeicate what I have. That fear then branches into, Will I be able to continue to work? Will I need a caregiver? My poor husband.... Can I have kids? What if I have kids but can't take care of them? Can i continue with Karate? I hate not knowing what will happen, I hate that its such a guessing game, I just hope I end up a lucky one, but after this Dx, every MRI since Dx showing active lesions, failing on Copaxone and now muscle weakness I just don't know. I cross my fingers for Rebif and keep trying to live healthy and happy...

CONFIDENCE
I'm confident about my Dx, but I hate to say this and I'm sorry if I offend anyone. In fact please disagree with me on this one, some faith would be nice. I don't believe the disease modifiers work, I don't believe any of them work... still I take my shot and hope. I just can't believe they work, 33% success is low, the difference I see on the graphs are low. I failed copaxone. I believe anything that seems to work is just because in that individual right now they are in remission. Theres no way to test for that. The treatments only work in RRMS.... but saying all this multiple studies have shown the core CRABs have some positive effect in some people. It is however not good enough....

Sorry for the rant, I hate MS. It makes me feel alone. No1 can see how you feel inside, so for the most part I'm alone suffering. I feel like my husband, family and friends don't understand. Only you guys understand how it really is for us.

Sorry this is also kinda negative. I'll finish with, BUT I DO LOVE MY LIFE :). Even if they don't understand I'm glad my family and friends are there.

[sllowe]

Now that it's a new year ................

WHO is in their 1st year of dx?  Those who responded to this initially, are you still dealing with the same common things (if so, how did you overcome?)......collectively, here is the breakdown:

FEARS
    -the disease
    -the future
    -proper dx
~CONFIDENCE
    -DX (RRMS, SPMS)
    -Disease modifiers