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

[Milliepede]

Six for 8 years (RR) but worsening Sept. 2012 and dx Jan/Feb 2013.

Starting Tecfidera when it arrives.

Glad to find this forum.

Blessings to everyone.

[Corriel]

Dxd in April of this year and like Karryon, my family will not be supportive at this stage. None of them want to hear about effects of MS and are reluctant to learn anything about it. They are content to ignore it unless I mention a symptom.

I have been seeing a counsellor for a few months to accept my dx and my current drama is at work. I will get my neuropsych eval in a few weeks and will potentially have to make some big decisions depending on that report.

This forum has been invaluable to me in so many ways and I am grateful to have found it.

Corrie

[sllowe]

Hi Carrie,

Let that guilt go girl. It will eat you alive - this I did too, even though my kids were bigger, they still needed me. I couldn't cook the same for them, didn't see them because after work I was in bed, and when they spoke to me I just couldn't get my response out. It was horrible.

Remember this - being present is good. And, you've got many years to cherish. I'm doubtful this will strip you of any of that guilt yet - it takes time to get rid of it. But, just want you to know that it is ok :) It really really is. Your love for her will shine above all else :)

Karryon - Your probably right about fam not really understanding, or just being tired of it. You lean on us and keep doing what you are doing. Focusing on keeping what you have, and then adding on the counseling. You take care of you - no sense wasting energy anywhere else, you need all you can get and you can't afford to exhaust it on those who are unwilling to learn. Doesn't mean they don't love you - it's just beyond them :) And, that is ok too.

This post goes way back bu so much needed testimony in it.
-Shell

[karryon55]

I was dx'd coming up to 4 weeks ago. I am a bit all over the place really. I have told my parents only & they don't understand nor have they bothered to try to inform themselves. I've told them all the positives so I didn't put any fear into the situation. I think I'm learning they will not be the ones I can lean on for support. I have had medical problems all my life so they are a bit passed it all.

I don't have anyone else to talk to about this so the MS Society are arranging a counsellor. All that said I think I am doing pretty well. I seem to have anxieties of what "could be" but I am tucking them inside & am focusing on what I am now & what I can improve on.

I am already on Rituximab for 5.8 years for my arthritis so I have been on a DMD for a while anyway. My concern is that I have really just been slowly progressing in the last few years & do wonder if I have SPMS. I already know I have probably had MS for 15+ years. My Neuro is watching me to see at the moment but for sake of treatment will probably keep me under RRMS.

I think it's a bit different for me in that I already have significant problems from other autoimmune conditions so I'm used to having medical issues in my daily life & MS is just another to add to the list. I hope this makes sense. My communication skills are not good. It takes me lots of tries to write something.

Finally to add the most important thing in my dx has been the community here. People have been so very supportive. I have experienced nothing but kindness as well as added good humour from the members on this forum. You have all made this process all the easier for me with your support & kindness. Thank you always. Karry.

[carrieblackwell77]

I was diagnosed in April of this year.  I had my second child 18months prior and had felt like hel* since her birth.  It's comforting to read everyone's fears because they mirror my own.  I'm still dealing with this but I've worked my way through a lot of the grieving process.  I was scared (still am) of the future as a mom and I was so angry that the first year and a half of my daughter's life was such a trial instead of the magical time it should be.  

[sllowe]

Bump! For newly diagnosed

[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

[SarahL2491]

I'm with Kyle but coming off of Tysabri, having been deemed severely Allergic to it....sigh........now having nightmares about rebound and what to pick next.

[sagecountry]

I hate needles too. I had a nurse show me how to give an intramuscular injection last week for my Avonex injections. The needle is quite long since it has to go into the muscle. This week, I was supposed to give it to myself but couldn't. The nurse agreed to give me my first month's injections because I'm that scared of the needle.

I'm using pre-filled syringes for the first month because of the titration method where I am slowly building up my dosage. Once I'm on the full dosage, I will switch to the auto-inject pen. It's my understanding you can't see the needle in the pen. I sure hope I'm able to do it on my own if I don't have to see the needle. Otherwise, I don't know what I'll do.

This disease makes us face things we don't want to face.

[byyygrace]

Thanks for your encouragement-it's nice to know there is still "life" after an MS dagnosis!

Colin

PS I am female with a male name! LOL

[byyygrace]

You are brave! I don't know if I can do that-I know everyone says it but 'I hate needles!". Sorry about your dx, but glad your getting treatment. I'm wondering about the new pill or the once a month infusion? That sounds more appealing to me! I'll have to ask my neuro next week. Let us know how your treatment goes!

[GoingThru30]

Undiagnosed as of yet, but been dr's suspected since Aug '11. They've only done brain MRIs but I have this feeling it's spinal. Should I request or "suggest" it rather? I have terrible, debilitating back spasms and this constant tightness in my neck....not to mention this constant "brain swimming" & head tingling. Is there ANY way to stop any of this or put a rush on a diagnosis?? Lol...tired of feeling SO BAD day in & day out without knowing what's causing this. Everything fits but no sign of lesions....in the brain at least.

Sincerely,
Tired of Waiting

[grandmalaurie59]

I was just diagnosed last week. Since this is technically my first attack, My neuro called it "Clinically Isolated Syndrome" but says it is definately a demyelinating disease most likely MS... he ran several blood tests to rule out other diseases.. which I will find out the results on Monday.

Laurie :)

[sllowe]

Thank you all for sharing some of your first year concerns!

Will take what you've provided so far, and then start posting (individually) topic specific information, and discussion to address each.  

You've filled in the gaps nicely and I now have a good list to go by to put up what you need :)

[handyside]

I too was diagnosed in September, just took my first injection of Copaxone this morning.... Sat there for probably 10 minutes working up the courage to push the auto-ject button. For weeks I have been coming to this site reading everyones comments and questions. What a great resource for newly dx'd. Thank you to all that take the time to answer questions on here.

[jibjen]

Hi there,

I am in my first year with dx. Officially dx. 3/2012

JibJen

[sagecountry]

As a newbie, (diagnosed 3 months ago) my biggest fear is the unknown. Will I have another flare? When will it happen? How bad will it be?

DMD... Will it work? or not? Will I have bad side effects? Will I have to take something stronger?

Will I become disabled from this?

I could go on and on.....

[Maks322]

Not sure my biggest fear - I go Tuesday for my second opinion with a MS specialist.  Do I want a definate answer or not.  If I get one, will I believe it?  Probably not.  I know Im not ready.  I feel like a different person today than just 5 months ago, the day I went to my PCP for 2 seemingly related non-bothersome symptoms - a droopy eye and some trouble swallowing, will it be worse in the next 5 months - or have I hit a plateau? My neuro and PCP both commented it hasn't progressed that fast.  Reading this forum, I know it could be so worse.  But I no longer feel like me.  My body has so much pain and internal tremors, jitteriness - like I want to jump out of my skin, I have lost the ability to eat like I used to and have lost 20lbs, my work is suffering with my memory loss, what will I feel like in a year?

Hopefully I've hit a plateau,

Maureen

[kwarendorf]

SPMS ain't that bad. I got it and I'm doin' fine :-)

Kyle