It's Official.......I have MS
 

Yesterday I was officially diagnosed with MS. My MRI showed 3 lesions on my brain and one on my spine. I’m a bit shocked and scared but also relieved to know what’s happening to my once able body. It’s scary not knowing what will happen and how my body will react.

She wants me to start therapy (injections) and has given me literature on several medications. She wants me to read up on the treatment and have input as to what we decide. She feels that Copaxone is a good choice to start with because the side effects seem to be minimal compared to others. And she said it is very possible that I will be feeling pretty good by Christmas.

I'm leaning towards Copaxone, although I dread having to do 365 shots and more and I don’t think I can stick myself with a needle. I can’t even stand letting someone else do it let alone myself.

I’m going to have a ton of questions so please bear with me. I know nothing about MS or it’s treatments or strange nuances. I have to do my homework this weekend and read the literature my doctor gave me.

I think I do have some situational depression right now. And the possibility that I may progress into a more disabling state is daunting. My doctor thinks I should start on an antidepressant. I was against that at first as I always have been one to just stay strong and upbeat. But I think it may help at this point, at least for the short term anyhow. Then I can re-evaluate. I also am concerned about depression as a side effect. Any more and it will be too much for me to handle, I'm afraid. So it might be best to start treatment for that as well. Nip it in the bud so to speak.

Right now I keep telling myself………I MAYHAVE MS BUT MS DOESN’T HAVE ME!!

And in retrospect, thank goodness the default font is so big :)

Thumper:hug: sorry, but also glad you got a DX and a direction to go in now. Its a double edged sword, that's for sure. The Copaxone has an auto injector its actually easy for me to use, I am not a huge fan of needles.

just take it one day at a time, keep writing down SX and med reactions and so forth...

now you know what you are facing and can adjust adapt and figure out what is what,

again sorry for the DX, but am glad you have answers:hug:

:hug: Thumper :hug: It's never easy to hear that you have a disease. But, if you've been in limbo at least you know what it is and you can deal with that.

I am the world's biggest needle weenie and I was really nervous about having to give myself shots everyday. I started out on Copaxone, too. A nurse comes to your home and teaches you how to do it and it's amazingly easy. The needle is so tiny that I didn't even feel it the first time I did it (with the auto inject). I had to check and make sure I had done it correctly! So don't stress over that...it's very easy to learn. I did have to deal with some injection site reactions (welts and bumps) but the nurse can tell you how to treat that if you do happen to have them.

You can be proactive about this now and that's a huge plus. I was dx pretty quickly after I went to the doctor so I didn't have to spend alot of time in limbo. But not knowing what's wrong is still scary nonetheless.

You'll do fine....sounds like you have a good Neuro on your side. Don't worry about what hasn't happened yet. Concentrate on the here and now and I'm sure you will feel much better by Christmas! :)

Thumper...I'm sorry and glad for you at the same time. All of us with a diagnosis have been there...it is a relief and that very uncertainty of the future all in one.

I remember when my neuro at the time told me...then he said, you will probably be in a wheelchair within x amount of years. I said, not without kicking, clawing, screaming and digging in with both heels. I've stuck to that...yes, my MS has gotten worse over time, but I still do walk...not as sexy or elegantly as I once did. lol

Oh yeah and the kicking clawing thing...I've been doing that since the age of two. :p

I thought of it this way...getting the dx did not make a difference in what I was feeling or how I felt. I had two choices to accept it and live my life or give up...I accepted it, I live my life the best I can on any given day...and I'm thankful for each day.

Some days I do remember things I once did that has nothing to do with the age I am now...its the MS saying...your brain says ok, lets do this...but the body says...oh yeah silly, watch me do this!! lol

sorry thumper.
i was dx'd in '03 and i've been on copaxone ever since.
i'm an RN and have given about a million shots. but giving it to ME was very scary.

i use the autoject and after a few wks i got the hang of it.
you get used to it, really. and then it becomes a routine part of your day.

i chose copaxone because i didn't want to deal with the interferon side effects.
i also had a hx of depression and interferons can make that worse. for me it was a good fit.

you can expect some site reactions but with practice and time they will diminish greatly.

you might want to consider some short term counseling to deal with the emotions of your dx. it's normal to feel in shock and afraid.
getting educated about MS will give you power and decrease your fears. at least it did for me. you might want to consider the therapy before you start AD's. it's something to just think about.

please feel free to pm me if you want to talk.

Hey Thumper. Hang in there, a lot of support around these parts. :hug:

Welcome
 

Hi Thumper!

Welcome to the group. Lots of us here and out there in the world.

Ask questions and don't be afraid.

Cheers!

Niko:cool:

dx'd 2000

Betaseron since 2002

Hi Thumper,
Sorry about your dx :( It's quite a shocker to get that dx.

Ask all the questions that you want. We're here for you!:grouphug:

Sorry you got the Dx, but on the other hand.. you know what it is.. and that is good! Don't sweat the needles! I too was a needle weenie. No more! You just think about them one at a time!

Welcome to NT! Welcome to the Club!

Did anyone show you the secret handshake by the way?:eek:

Hey! Nobody showed ME a secret hand shake..I feel so left out..:(:p
I love your avatar, Thumper..Great rhythm!
Sorry for the MS dx, but it is a relief to at least know it's not all in your head (just a couple lesions worth)..You'll do fine with the shots, I'm sure. Copaxone is a good first choice for many, even though daily shots seem daunting now..Read up on 'em all and I'm sure you'll make the best choice for you. Besides, it's not like you're married to your first choice or anything..If it doesn't work out for you, you can try something different..
Welcome to NT, and know we're all hear pullin' for ya!

Now you can tell people that it WAS all in your head (and spine) just not the way THEY thought it was. (did your doctors look at you like you a looney hypochondriac...a few of mine did!)


As for the shots,, if you pick Copaxone, I really recommend that you learn how to do it manually and with the autoject. Manual shots are a lot easier to do, and doesnt give you too big of a post injection hive as the autoject does sometimes.

Learn how to do both and then figure out which one is the best way for you to do the daily "stick". I did the autoject for probably just under 6 months before I got tired of the ritual of loading the autoject and having to figure out what setting to put it on for certain parts of my body. Just using the plain needle is easier to deal with for me. Plus, I think manual shots, if you can do them yourself, are much easier to control that the autoject is.

It's really not as horrible as some of us sometimes make it out to be. It's just...kind of tiring at times to have to give yourself a shot every day. I usually take a couple of days off during a month, just so I can pretend to be normal for a day or two, and allow any redness from the shots to heal a bit if I have any.

What's weird is, that I can give myself a shot every day, can look at the needle while I'm injecting and everything, but if someone else is going to give me a shot, I still cant watch them give me shot. It's weird.

Hi Thumper, and welcome to NT. :hug: You came to a good place. :)

Good luck with whichever therapy you choose. Before going on Betaseron, I was first on Avonex and then on Copaxone. I learned to do the injections manually, Beta was the first one I used an Autoject with.

Personally I like the Autoject, especially for my arms and hips. Places where it was hard to reach and sometimes impossible to see while doing an injection.

Thumper....sorry you had to join us for such a horrible reason - but let me tell you - this is a great place to be - especially early on in this new journey you are beginning (well an "official" beginning anyhow). This site and the people here helped me through some extremely difficult times - even if it was just me reading back through hundreds of posts. Not to mention - I've found a lot of knowledgeable people here, too! Great wonderful people!! :)

Hang in there....

~Keri

Hi Thumper. :Wave-Hello: Sorry you had to join us, but welcome to NT. The first year is described by many as the worst (emotionally) for dealing with MS. Hang in there. There are lots of nice folks on here that can offer you insight and advice. Just remember that everything that is said here is based on individual experiences and your experience may be different. Hope you have found a neuro that you feel comfortable with -- that is important!

:hug: Sorry you've got MS, but glad you have answers :hug:

Welcome and hugs,

I remember all too well how shocking it is to be diagnosed with MS. Definitely do your research and decide what you would like to try with regard to medications. Everyone is different but fwiw I've been on Copaxone for almost 4 years now and have been doing good, knock wood.

People with MS seem prone toward depression so that is something I keep in mind and don't hesitate to get help if necessary.

Wishing you well,
Jules

Sorry about the dx, Thumper.

Even if you've waited some time to hear this, you will go through a period of grieving; shock, denial, bargaining, anger, etc. I made some irrational decisions in that first year, so cut yourself some slack if things don't go along as you might hope for a while.

This is a great support network, with many caring and knowledgable people. Glad you found us.

Cherie

Sorry about the DX, but glad you found us. :hug:

I'm a needle phobe, and I chose Copax for my first DMD. So far, so stable.

I still cringe and tighten up when others come after me with a needle :eek:, but can give them to myself now with no problem. It gets to become routine.

If you can use the manual method, it's a lot better as far as site reactions go. Wish I could do it, but have to stick with the AI due to loss of fine motor control needed to do otherwise. But there are a few tricks learned along the way that makes things easier even with the AI.

The right AD can be helpful. It's helped me some, since a little depression can make the fatigue even worse than it already is. Remember though that not all AD's are created equal, so it might be trial and error to find the right one for you.:hug:

I'm glad you got answers, Thumper, but sorry for the DX..:( We are all in the same boat, here, just paddling along at different speeds.

I was on Avonex and then Copaxone for about a year....the shots were a breeze..er..after awhile:p. I was lucky and had no site reactions with Copaxone or side effects.... I hope you're as lucky and it works to keep you stable.

I'm glad you are here ..and we are here for you, too..:hug:

Hi Thumper and welcome, sorry to hear about you dx, you will get used to the needles, I used to do mine manually AND autoject for the harder parts, don't worry, you will get used to them.

Again, Welcome

Joe

another way to help with some of the depression is to just get into the social threads and write it all out. thats what i did a few weeks ago and as small a gesture as it was being able to spill that whole mess did help quite a bit. i guess i skipped the denial part and went straight into anger and didnt want to throw that all at my wife. i wasnt even expecting that anyone would read what i had written but just getting it out, telling someone made a difference. i still have that big blue binder my neurologist gave me full of stuff for the copaxone. i remember thinking if they spent less money on the big blue binders and other marketing junk how much less expensive the drugs could be. once i found out how much the copaxone was one of the first things i did was look up alternative treatments for MS. theres one you drs probably wont be telling you much about. theres a few of us here who use it.....LDN. low dose naltrexone. some of use use it alone and others use it along side the copaxone. its sometimes controvertial, because its not fda indicated for MS. plus its already available as a generic so theres not much money left to be made from it. so it probably wont be getting a whole lot of clinical study for its uses in auto immune issues. you can catch more info about it at www.ldninfo.org
its done some good things for me and a few others around here.

Hi Thumper,

Sorry about the DX of MS, but glad you got answers anyway. It can be hard not knowing what's causing the symptoms. :hug:

Erin, this made me smile. My husband used to tell me that it was "all in my head" After the diagnosis...I said, well, I guess you were right. It IS all in my head! It's our little joke now. :inlove:

Thumper - I am new to this website too. Welcome. You are so smart to be asking questions. I waited until NOW. They want to switch my medication from Avonex to Copaxone. Last week I met Rochelle (twinkletoes) and she uses LDN. I had never heard of LDN. There is so much to learn and lots of decisions. I'm excited to have new friends with great advice and experiences to share.

As you are deciding what to do, I learned from Cherie that the interferons (Avonex, Rebif, Betaseron) can worsen depression (did not know that) My guess is that is why your doctor wants you to look at Copaxone (not an interferon)

Good luck and keep us informed, it helps everyone when we talk about it. ;)

Hi Thumper

Getting an answer is good and I think everyone ahead of me has said about everything I would say. :hug:

Check out www.nmss.org for the newly diagnosed. There's some really good information on the site. Good information about medications, symptoms, treatments, etc. Even some support groups, exercise programs, seminars, etc in your area. Check it out. I am on the programs and services committee for our state as well as the government relations rep and we help where and when we can. It's not the only organization, but it's a start. ;)

I'm so sorry you've joined the crappy MS club, Thumper :(. We'll be here to help you every step of the way :).

Hi Thumper,

I'm so sorry you had to receive this cruddy diagnosis along with the rest of us. I was just diagnosed 14 months ago. I think you've already discovered how great people are on this forum. I'm so glad you got to meet Twink!! (Ro). She's the greatest. :)

All the best,
Natalie :hug:

Okay everyone line up and start smacking me. That's what you're supposed to do right :Doh:

My apologies for not getting back here sooner. A little about my situation so start yawning now. :Zzzz:

I live with my brother who's in heart failure and he's a diabetic. The day I posted here he just got back from the hospital having a new pacemaker put in with a defib in it. Sunday we were going to church and he held onto the top of the car as we got out, then it passed.

We went in church and with all the up and down he was getting dizzy. I thought it was his sugar so during communion I went down the street and got him hard candy.

We get home and he said he was okay. About an hour later he said he was dizzy and couldn't see. I called 911 for time #1. The said his sugar was 511 and to bolus.

Couple hours later another call to 911. Said his sugar was still high. This went on 2 more times. Then at 11PM he said he couldn't even see the TV. Called 911 #5. This time they felt his pulse in his ankle and it was very weak.

Off to the hospital we go. I follow and get there around 1AM. He doesn't have his pacemaker card and they won't even look at him. So I had to come all the way home and bring back the card.

Turns out one of the leads came lose and they had to take him to the OR in the morning. I go back in the AM and they said his new insulin pump came in and they wanted to put that in too. So I thought all is well. I work and was going to see him after.

Are you still awake yet? :D

He comes home on Wednesday evening and goes to bed. Around 3AM I hear banging on the wall. That's his signal something's wrong. I go down and he said he can't even stand up. I look at his leg and it's like a balloon. So I call 911 one more time and head back to the ER.

He had cellulitis and they think with the new insulin pump his sugar spiked. He came home Saturday and I think everything is okay for now. And with the marvels of medicine he went back to work today. He has a sedentary job and I think it's good for him.

I love him so much but it's scary not know what will happen one day to the next. Could be why I get so down at times. :(

That being said, thank you so much for all the replies. It took me 5 minutes to find that button. :) I haven't even been back to the doctor yet, I canceled twice. But I'm going Wednesday and get the ball rolling.

I think I'm going to like it here and I'm glad to know you all.

I'm heading off to work but I'll be back after and get to know you all better :hug: and figure out how to post pictures and put some things in my signature. :o

I didn't yawn once during your story. I'm just so impressed with how well you take care of your brother. Wow Thumper you are an awesome sibling! Your brother must really appreciate you.

One thing you have to remember now that you also have a chronic health issue is that you have to make sure and take care of you so that you are able to help him. Don't sacrifice your health to the point where you can't help either one of you!

Thumper, make sure to listen to your body and don't over do it! I find even if I am worrying about something it will trigger a flare. I think it is wonderful you are there for your brother! Just make sure you have some help, or at least someone to vent to so you don't get overwhelmed!

Welcome to NT. We are here for you if you have questions or need to vent! We can all relate!

Thumper,

Sorry about your diagnosis. (((Hugs))) Just wanted to let you know your in my thoughts.

Take care,

Coffeegirl