I guess it is Official - MS Dx

[jibjen]

Hi Everyone.

I have not posted in a bit, have been quite crazy lately but I had a nuero appt. today, and although I am not "surprised" at my MS Dx. (as we have been discussing it with my doc so much. It all came to life today when my doctor handed me my prescription for Avonex and my pretty little Avonex Support Kit to get me started.

I have to admit my eyes got teary as it has been a long time coming with this dx. as I always new in my heart (according to all my medical records) that MS was the culprit. But it just really seemed so "real" when I got my script.

I have to say I am scared. I know I am going to be okay, but I am scared, maybe because I just watched the DVD's about my injections and I am not totally thrilled but I can do this.

Thanks for ALL your support and advice throughout my years of limbo with this.
Jib Jen

[jibjen]

Thanks so much. I will get through this. This forum has been so great! I am sure I will be here more oftem :o)

Jibs

[Guitar_grrrl]

JIB JEN!  Wow, it's been a while!  I'm so glad you checked in with us, and let us know the news.  Like the others, here, I'm sorry for your diagnosis, but glad you can move forward in fighting this MeSs.

It was 2 months after my diagnosis, when I was ordering up my Rebif, that I cried about it for the first time.  It took that long!!  I felt better about it once I confided in my closest friends and family, and I've had nothing but support, ever since.

Don't worry about the shots. You can do this...
Hugs,
Lisa

[Mike_Shuswap]

Hey Jibby, I'm pleased you finally got a dx. I know it can seem a little overwhelming at first, but it's for the best that you now know for sure what you're dealing with.

I am sorry for your dx, but congrats all the same.

Don't worry about the shots, you can do it.

Mike

[Lulu54]

and it is always the patient's choice for the injection method.  I hope the pen is available to you soon - someone said it won't be here until MAy, but I do know the FDA has given its approval for use.

[Lulu54]

Goodness girl, it sure took a long time to get up that dx mountain - welcome to the other side of the climb.  I am sorry you got this official word but you have known this for quite some time.

Good for your doctor to let you make the final decision o nthe DMD.  If it turns out it doesn't work for you, there are other ones you can change to.  It's like dating - if the drug doesn't treat you right you can dump it and move on.

Congrats in a strange sort of way - so glad you can finally start this fight with the best tools possible.

hugs,
Lulu

[sllowe]

Jiiiiiiiiiiibs! Holy Schmoley Jibs.

Your right. You can SO do this :)

If you feel uncomfortable about the IM injection - ask about the other interferons, i.e., ribif, or beta. Though they will be 3 and 4 times a week instead of 1 weekly.

However, compliance is what keeps you taking your med, and that is the goal. Taking it on schedule, and injecting into the proper layer. Your doctor probably considered this too w/his suggestion.

You can call the nurse at anytime - they will likely tell you to call back once your meds arrive. But, at least you'll have made the initial contact. Keep in the fridge until your appt. comes.

Hang in there Jibsy - we got your back with this. Always here for you :)
-shell

[michelleric]

So sorry to hear of your DX jibjen.   Those words r never easy to hear...Even if we are "expecting" it.

Hugs,
Michelle

[jibjen]

Hi Everyone,

And thanks for your kind words. You guys have been a great support through this process.

I started with a doc for 3years that really dismissed me until I finally went for a second opinion. My current nuero is an angel.I have not even been with him a year and he seemed to wrap this all up. He said MS from the first visit..

"We" had discussed starting a DMD a few appts. back and he gave me info to inform me of them all but wanted me to research them. He stated he felt the best choice would be Anovex, due to only injecing 1x a week and the side effects seem to be pretty managble, and based on where I am at with my MS.

After reading everything he described each one to me and explained why Anovex was the one he felt was best. I trust this doc so we agreed.

I am releived, don't get me wrong, that I am taking a step towards delaying any progression with my MS as well as minimizing my relapses but it did really just give me a reality check.

I had also had low Vitamin D that we had worked on getting back to normal.

I need to call to set up a nurse to come and train me. I guess once that's set up I will fill my prescription and get this started.

I noticed, for anyone taking Avonex, that the website has the Avonex Pen. Do you or anyone know if it is the patiet's chice what type of injection method is used?

Should I get my meds first and then call for a nurse...little overwhelming..

I guess I will find out when I call.

Thanks so much again. I am sure I will be here again AND more often

Big hugs to you all
JibJen

[supermum_ms]

Wow Jen, its been a long long time in coming hasn't it? I'm sorry your dx but not sorry if you understand where i'm coming from, it just been too long a wait in limbo and i'm kind of glad your not still hanging there.

Its quite understandable to be scared, anyone would be so take a minute to breath, relax and knowng you, your sure to find your courage!

HUGS........JJ

[bettebelle]

JibJen,
Sorry to hear of your DX.  The emotions that come with the actual dx after the course of tests and possibly years of testing can be like a roller coaster.  I know that I personally have good days and bad days.  I received my dx in December and some days it still doesn't feel real.  I also am on Avonex and thus far, it has treated me quite well with little to no real bad side effects.  I hope your injections go well.  They were intimidating at first for me, but now they are a breeze especially with a routine.  The only real suggestion I have is to please be sure to not have anything planned for the day after!!! I have found that if I don't get enough rest, that is when I notice side effect.  
Best of Luck,
belle

[anon07072023]

I understand the feelings that you are having right now.  This is what you've thought all along (MS), but now it's no longer a "maybe."  At least you know you have a huge support group here who have gone thru similar experiences and we here to help & listen.

You know for sure now, and you can start moving forward with DMDs so you can lessen future problems related to MS.  It takes a strong person to be in limbo and to continue to pursue to figure out what it all is, without just giving up.    
    

[saucygrl]

It's very understandable to be scared.  Somehow I thought I had wished it on myself for a few days, but then I realized a part of me had known for quite some time what was wrong with me.  It just took the doctors a while to catch up with my thinking.  I had to make a lot of noise for someone to finally listen to me.

Once I started on Copaxone it got easier because I knew that I was doing something to help myself.  This site has helped me a lot.  There are lots of people who understand how you feel.  Your aren't alone!!

[Sidesteps]

I picked Avonex for similar reasons as Jibby - I opted on Avonex due to where I am at in my disease process, the amount of times I had to inject and I honestly do not think my body will manage site injection reactions with Copaxone. I think if it becomes too much mental work I won't want to take it. I can tolerate seeing if I have 24 hour of flu symptoms that can be managed easily with ibuprophen and tylenol. I hope.

[Mummy76]

Hi JibJen

I just went through this on Tuesday.  I knew it was MS but being told I needed to go on a DMD made it all so real.  It meant that I couldn't keep hoping that it was something else and that I had to tell my family that it was MS.  

Message me if you ever need to talk.  I know it is bleak now but I have my fingers crossed that soon it will get better, or at least manageable.

PS - did you neurologist say why they want you on Avonex?  My neurologist has asked me to pick my own DMD and I'm struggling to make a choice!

[Sidesteps]

((((hugs))) I will think of you here too.

[DiannaKw]

I am about to be in your shoes... its only a matter of days.  

[HVAC]

Jib Jen,
   Scared is normal. Yes injections do make this thing real. It is okay to be scared. I shook like a leaf when the nurse came over. There are so many emotions we all go through.

   I tell myself nothing real scary happens in the moment it is usually what I am anticipating that is scary. Breathe.

  I am sorry you have this disease.
  
   Alex

[figuerpa]

Jib Jen,

Sorry for the dx. I was the same way, I knew I had MS but when the doctor actually said it is when it really sank in.

You will have a world of emotions roll over you, just know it is normal. Did your neuro give you a choice of DMD's or did he/she pick for you?

Mine wanted me to do Avonx or Gilenya but I chose Copaxone for side effect purposes. Just so you know that you have an option to change your mind.

My sister has MS and has been on Avonex for 9 years or so and hasn't had a relapse since she started it. She said the flu like side effects lasted for about 6 months now she is just tired after the shots.

You can do this. Do you have a nurse coming to show you proper injection techniques?

Good luck to you and you know we are here if you need us :)

Paula