Right now I want to scream. But I dont have the energy to scream. Maybe even to

I want to yell - okay, enough of this - joke's over - i get it - ha ha - funny - but time to move on.


Or this:

This is so unreal. It can't be real. It just can't be happening. I don't know what to do. How can this be happenning?


I've only been in this for 5.5 weeks. Came from out of nowhere. no warning. didnt have a history of illness - wasnt waiting for a diagnosis. Wasnt sick. strange symptoms started Dec 22...diagnosed Jan 4. WHAT THE HECK IS THAT????

Does anyone else want to just scream? or cry? I dont want a pity party - that isnt me, never has been me. Ive always faced my crap head on. Dont need anyone to play their little violins for me. Just thought i was passed all of this and on my way in life. And now....? what, exactly, do i do now? Yeah, sure, you can tell me that "I have MS, but MS doesnt have me" - but you know what - when I wake up in the mornings and dont know if I will being double vision and if I will be able to drive or work or function for the day - the frickin MS does have me. I have to accept it - even if just for that day - in that moment - i'm not in control - im living under a big frickin question mark over my head - not knowing what my future holds. And i want to tell my doctor to take his grim prognosis and shove it!


I'm new to this - these forums - and this disease. I did an introduction in the newbies section - you can read it if you like - but to make it short - a few days before Xmas - right side of my face/head went numb. Thought it was because of my jaw - I have bad TMJ problems. Didn't see doc - as it was a holiday week - between Xmas and New Years. Jan 2, my dental specialist said to get to a neuro sooner rather than later. I thought I had a pinched nerve up there somewhere. My vision started going whacky. Next day I was in ER where they did a CT of my head - showed no tumors (yay). Next day - Neuro tells me that he thinks I had a stroke. STROKE?? What the.... I'm 31 years old - what's he talking about. He rushes me for MRI and MRA. Two hours later, he called me -on a Friday afternoon -he says, "Okay, it wasnt a stroke" - I take a breathe - he e says, "You have MS" - I say "WHAT?" He says "MS. Do you know what that is?" I answer that I do. He proceeds to talk for 12 minutes - I dunno all that he said - I was totally out of my body. I remember asking a few questions about prognosis, treatment, and to what was the most important question: can i still have children. Other than that - I can't tell you much more other than he told me it was aggressive and we needed to act fast.

Even though it's only been 5 weeks since Dx, I just finished my first 30 days on Copaxone. I hate them. Next box arriving tomorrow (Tuesday) morning. I can't take the interferons b/c I have a bad history of depression and my doc doesnt think it is smart for me to take it. He wants me on Tysabri - I want to take Tysabri - he wanted me to wait 3 months on Copaxone first - but I dont want to wait it out. I think he knows copaxone wont be strong enough for me. Interferon might be my 2nd best choice, but still not good enough. I need to see if the Tysabri will work for me. Tomorrow I call and tell him to start the call rolling. Meanwhile, I need to continue to really hope that I even have the RRMS and not PPMS.


Im alone. I have no family. Im young. I feel like my dream of a family and children have just been ripped away from me. So now I dont know what i'm doing anymore. And this lost and alone feeling is scary, very scary. I have a few close friends - but at this point - they have been so good to me - but they are tired - they have given what they can, but they're burnt out now. Plus, ya know, "I looks SO good" - ha! My new walker is being delivered tomorrow - friends havent seen the bruises from my falls so far - caused by the dizziness; they dont see the shower chair and the bars in the shower now, or the welts located in 7 places around my body from the daily injections. they dont see the headache that has been nonstop for 5 weeks now...that even painkillers can even touch for more than hour.

I'm so close to a complete and total meltdown. Oh wonderful, there's even an icon for it:

Need to use the icons tonight b/c i can actually see them right now - later on, I might not be able to see any of this - as the IV/SM has worn off (had it for 7 days (Jan 8-14 @ 1gram a day) and it worked for a bit - some symptoms let up for a bit - and now they are returning. Anyone know if it is too soon to go back on the solumedrol??

Sorry for my rant. I gave myself my Copaxone shot - and then I couldnt find my mini icepack (a childrens one - wrapped in a terry cover - with a polar bear on it....) Had a lil meltdown from that, too.


~Keri

Keri I'm so sorry you're having a rough time. I despise that saying "I have MS, but MS doesn't have me"! Of course it does! I'm a realist.

Everything has just been slammed on you like a sledge hammer. It takes some time (I'm still not believing what is happening to me and it's been 9 mos). I never really thought I had MS during my years without a diagnosis.


Visit multiplesclerosissucks.com . He has some good stuff on there.

Just know that we're all here to help ya! It really does help. I'm starting Tysabri tomorrow. I can't take Copaxone or interferons. Are you on an antidepressant? It can really help.

PM me if you need someone to talk to, anytime!

Hi, Keri

I am one of those who really hates when people say "I have MS but MS doesn't have me" BS. This disease does what it wants, when it wants and as for being in control of this disease....yeah, right MS can and does what it wants.

Right now you are scared, overwhelmed and feeling like crap - why wouldn't you, you were just diagnosed with MS. You will go through a whole slew of emotions and it's perfectly normal - your dealing with the grieving process.

I am betting that as the years go by and you learn more about MS you will come to realize you have had this disease longer than what you think. There are so many symptoms which are easliy brushed aside or not even given a second thought. Minor things, odd things gone in minutes or seconds.

I was diagnosed at the age of 25 (46 now) but through the years I have come to realize I had symptoms as a kid. It's odd to experience a symptom(s) in current time and your mind goes "hey, wait this is really familiar" then you start to remember a time before you were diagnosed.

I was married at the time I was diagnosed but we didn't have children. We now have two teenagers 16 & 18. My children have grown up with this disease and I have had an active part in their lives.

Part of having this disease is symptoms. Some have few to none when not having an exacerbation, some have symptoms that come and go, some have permanent symptoms and yes, some have the progressive MS but we all try to live our lives to the best of our abilities - as you will learn to do, in time.

So, for now - scream, cry, be angry or whatever emotion your having at the moment and know we are here to listen and maybe, just maybe....help

Being blindsided is no fun. My DX process took a little over a year, and I was another one that the first MRI was to check for stroke or tumor.

The first year is always the hardest. When I first heard that, I laughed. Going through it, it's true. I know my emotions are all over the place sometimes. I hate being 33 and feeling like I'm 80 sometimes.

I'm also on Copax due to past depression problems. I too hate my shots 'cuz I'm a needle phobe, but I do it because it's better than the options my mom and my grandmother (dad's mom) had.

If you need an tips that might make the shot easier, let me know. I've had some things work a little. Also, the problem is that it usually takes time for the shot to get easier.

Hang in there!

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, bless your heart. We have all felt overwhelmed by this disease at somepoint or somepoints. You are NOT alone here. You will make some board buddy friends.

Being in bed is the PITS. I had an exacerbation that totally wiped me out last year - in the bed, not able to care for myself....my spirit left me.

I had to find it again. And a year later I'm happy to say that I'm self sufficient again...

I found comfort in reading facts about the disease and reading some uplifting stories written by MSers...I also loved and still do to read comedy....Find the book - Coffee in My Cereal by Lorna Moorehead...it is about her first 5 years with MS and it is really funny...

I'd encourage you to look for a MS support group in your area. If you need to invite a friend to go with you and drive you there. You will hopefully find some people there that you connect with.

Slow down....chose ONE chore that you need help with....and ask for help with that. Chose one symptom that is driving you batty and ask the doc to help with that symptom....take it one day at a time. one hour at a time.

One thing that shocked the pants off of me was to learn I wasn't in control of anything. WOW....I really thought if I do this and this than I can do that....MS will knock you for a loop everytime you think this way!

Take care, and do reach out to us. We are here.

Peace.

I’m writing in a larger font because I have been told that sometimes the smaller fonts are hard to read.

So sorry to hear about how bad things are going for you. I wanted to let you know that I married my husband seven years ago and I knew that I was becoming his full-time caregiver before marriage. We lived together for a few months before we got married. He was diagnosed in 1986. He was kinda like you. He woke up, went to stand up, and went to the floor. He tried to sit up and couldn’t. He was blind in both eyes, couldn’t speak, and was almost paralyzed on his right side. They put him in the hospital and had decided he had had a stroke. He had to wait many months for a diagnosis. When it came though there was nothing they could do for him back then. The numbness went away, his eyesight came back, and he was able to speak again. He had to walk with a cane though. When he met me, he could only walk short distances with a cane. He now is not able to walk at all.

You had a question about Solumedrol...he would have a dose every month for or more depending on if he was having an exacerbation or not and also how bad it was. He did this for about eight years. I would call you doc and get back on the Solumedrol.

Can anyone else answer the question about Solumedrol…