Back from MS Specialist!

[debtea]

Well, I went to the MS Specialist that I have been seeing for a while and today he confirmed that I have MS.  I received the fax stating it last week or so, but kinda didn't fully believe it.  I guess I expected them to say..."wait, this is a mistake!", but it isn't.
He put me on Vesicare, Lyrica, Vitamin D, DHEA, and has the nurse coming out to start me on Rebif.  I am a bit frightened about this whole self injection thing.  On the other hand, I am happy that I may start to feel better soon:).
I have another appointment with the other MS Specialist in the area tomorrow - kinda want to cancel now that I am being taken care of, but I guess I should go and see if he has something different to say.  What do you all think?
Seems wired that I wanted validation for how I have been feeling for so long, and now that I have a diagnosis...I am sitting here not knowing how to feel.
Anyhow...thanks for listening - knowing you are all there makes me feel less alone!
Debtea

[naynay_az]

I was diagnosed with MS in 2004..I knew before the diagnosis that I had MS but I too lost it when I got the final diagnosis.. There is just somthing about somone saying "you have MS' You are kinda relieved that there is a reason for the symptoms but sad that you have MS..I know it *****.I started on Rebif then did Copaxone and then nothing for the last few years.

I seen a new doc yesturday that explained Copaxone different then anyone ever had..When you do your shot. You will exsperienece a burning..I was always told that I would not feel any different but I did and that it was all in my head because it takes a year and they only stop the relapses and new lesions. Well this Doc who is well known and was TOP DOC 5 years in a row. Exsplains to me that . The shots are designed so that your white cells attack the shot instead of your brain. So if they are focusing on the shot and not attacking my brain..Of course i will feel better..So I knew it was not in my head..So dont be surprised when you do start to feel better after a few weeks..I did and I am also going back on the copaxone..He also explained that no matter how bad your progression is..Once you develop a lecison that say stops you from walking..You can't go back..If there is a drug to prevent that from happening why not be on it..So I am going back on it !

[twopack]

You will do absolutely fine!  Like the LP, all the thinking about this is far worse than the actual event.  There is no reason to assume that so many other people have made the adjustment to self injection and you would become the rare exception.  Just think of the young diabetics who stick themselves multiple times each day to monitor their blood sugars and take insulin.  Make them your heroes.

The needle has NO power over you.  You won't even see it as it is hidden inside the auto-injector.  It's the medicine it delivers that you want.  That is the thing that will help your body fight back against MS.  Keep your focus there.

You can and will do this.  Just don't think about treatments anymore right now.  Keep your mind busy with things that need your focus today.

Mary

[sllowe]

Hey Deb!

Glad you know what you are dealing with. That's quite alot of meds to start at once! Hope each work for the symptoms. You'll find Rebif bearable I hope. I'm on it and do well with it. The nurses are fab - you'll be in good hands there for sure. Ask anything, anytime!

Hoping you have a couple weeks to start the rebif, that way you can wrap your head around this  then  take a breath and then dive in.

Here for you,
Shell

[debtea]

Just wanted to let you all know thtat I called and cancelled my appointment with the other MS Specialist.  I could not see any reason to put myself through an hour and a half trip after getting everything on track yesterday.  Thanks for all your posts.  Now if I can just get past the shots part of all this....:(
Debtea

[debtea]

Just wanted to say thank you for th welcome and your support.  I feel the same way looking for it to be not there and then feeling it in my body, only to realize it is there.
I think I am handling it ok - right this minute, but keep thinking about the self injections and can't help but be scared.  Hope the nurse can calm my fears for me when she comes to teach me how to do this.
Anyway...thanks again and hope all is well with you!  
Stay cool.
Debtea

[Sparkysarah]

A little late in responding and no need to reply but I just wanted to add my welcome and support to everyone else's.  I know when I was dx'd in March this year I felt so helped by this forum and particulary at this time when emotions are all over the place.

I think it takes some time to get used to the idea and I have days when I just think I can't have MS and part of me looks for validation that it is not real. Then I feel something in my body and I think "Damn" there is that buzzing again.

Anyhow take all the time you need to get used to having MS and be prepared to stay on that rollercoaster for a while. Welcome and like everyone else I am sorry that you have joined those of us who have MS (and also those in limboland) but you are among good company and will make many friends.

With love and hugs

Sarah x

[debtea]

Thanks so much for all the replies and well wishes.  I have been thinking about all of this most of the night.  I know it is ok to have mixed emotions, but I really didn't expect to be so sad.

Essdipity - I never even checked to see if my insurance covered a second opinion.  I really don't want to go to the other doctor today, but my mother made the appointment for me and has a very good friend that sees him for MS.  She is excited me to go and I hate to let her down, but I don't see the point.

Figuerpa - I hope you get some real answers soon.  With a sister that has been diagnosed, you must have a good doctor to go to.  I am with her on the knowing the diagnosis, yet crying when you get it.  Wierd but I guess it is still hard to digest.

Red - I hope you are right and the needle is small with little pain - I am a big chicken and the whole idea of doing this scares me.  I am going to call the other doctor this morning and see what they say - maybe it isn't too late to cancel.  I hope they won't charge me - it is bad enough that my mother will be upset.

Sarahsmom- I chose the Refib because the doctor told me that the oral medication should be out in about 4-6 months and he said that the Rebif starts working in your system faster than the other injection medications.   Also, three times a week sounds better than everyday.  Like I said - I am a big chicken! LOL.  Thanks for the emotional support.  Everyone on here is so great in that area - i feel blessed to have found this forum.

LuLu - the climb definately was exhausting, which is why it was strange to have such mixed emotions when the dx finally came.  I do feel like I am on a rollercoaster ride (even though I have always been too scared to go on one)!  I am going to call the other doctor this morning the minute they open and tallk to them.  I would hate to go and have them tell me they need more tests.  I am too tired already.  Thanks for your support.

linnieom - I am sorry that you just recieved this diagnosis as well.  I don't know much about Copaxone, other than you get daily injections.  It was the other choice that my doctor gave me.  You are defininately right knowing it is coming doesn't make it any easier - Good luck to you too!

twopack - thanks for letting me know that I am not the only one that has reacted this way.  I guess it is hard for everyone when they get the dx.  I too wish the relief lasted longer - I expected it to.  As for my appointment with the other doctor - I have decided to call them - but I was kinda hoping he was Dr. McDreamy, so I looked at his pic online and not my dream man - darn! LOL.  

Tonyad - I do plan to stay with the doctor that diagnosed me.  He really was super sweet and cocerned.  He made me feel like he really cared and wanted me to feel better.  He apologized for the delay in the final diagnosis and had a plan all ready.  He is very personable and even talked about his family.  I also think the other appointment will just further exhaust me - I am tired already from yesterday.  I am calling this morning.  Thnaks so much for the well wishes.

You are all great and I would definately be lost without this forum of fine people.  I have learned so much just from reading other's posts and the support I get here is something I treasure.  Thank you all!  I will let you know what happens with the other doctor after I call them later.

Debtea!

[tonyad]

   I like the others just wanted to say that I too am sorry fro the Final dx and the So - Real feeling that comes w/ that piece of paper that has the dx code on it they hand you when you check out. That was the break down for me.   I looked at it and for the longest wanted to see a correct, proper dx code on that sheet of paper...BUT, then I got It!  Boy did I get it.....

    I have to agree with Red!  I would also call in the morning and let them know that you have your Dx and then take it from there.  Do you have plans on staying w/ the MS Specialist you saw today anyhow??   If so then perhaps the appt would / could be an exhausting one especially if he throws you back on some sort of Roller coaster and / or wants to do more tests!

    You will do what you know is best come morning time :)  I wish you well...And again, I am sorry for your dx but glad that you now have "Solid" answers!  Let us know what you decide and how it goes.

Take Care,
~Tonya

[twopack]

Almost everyone here who has been diagnosed after searching for answers has reported this type of reaction Debtea.  It doesn't matter how sure you were that the diagnosis should or would come.  It doesn't matter how prepared you thought you were.  It doesn't matter how much relief is mixed in with the reality of the diagnosis.  

Receiving the MS diagnosis always means you're going to be letting go of something else.  That double wammy is more than enough to set off a grieving process.  You are going to be working through this for a while.  I'm sorry the relief doesn't last longer.  Feel free to express yourself whenever the need arises.

I think I'd keep the appointment tomorrow.  Just be upfront with the doc about what happened today and the plan that is in place.  There is nothing wrong with getting another opinion and if a doctor or their office staff says anything different, the problem is their own.  You may need to hear this again.  Heck, what if he ends up being a Dr. McDreamy?  Might as well make your eyes happy for a day.

Take care.  You will be fine, just a new normal Debtea.
Mary

[coffeeom]

Hi   debtea.

I have just been diagnosed too...they have me starting copaxone.

I know just how you feel..even though you know its ms...when you hear the doctor say it hits hard!

good luck to you!!!


xoxo Linda

[Lulu54]

Be prepared for a wild ride for a while - the ups and downs of dealing with a diagnosis, even though you instinctively knew it was coming, can be quite turbulent.  

It is hard to explain the feelings of relief and grief coexisting side-by-side at the same time within us.  Until you've been there -  and now you are part of that group that truly understands.

Allow yourself lots of time to process this - take all the time you want because you have a  full life-time ahead of you (MS doesn't rob us of any years!).

As for the second opinion, do what feels right for you.  If calling them and explaining your situation makes a difference, do that first thing in the morning.  In the meantime have a good cry, don't kick the dog,   and remember that lovely Roosevelt quote you have on your profile ....  we all look fear in the face and come out better people because of it.

welcome to this side ofthe mountain - that climb was exhausting, wasn't it?

be well, Lulu

[Sarahsmom46]

Like the others have already said, a second opinion is never a bad idea. Go see what the other neuro has to say.  

I am sorry you have been diangosed with MS, but thankfully we are living in a time where there are treatment options for slowing the progression and the research world is working hard on trying to find better treatment options and maybe a cure some day.

It sounds like the neuro who diagnosed you has you on a proper course of treatment for what your MS and your symptoms.  If you like him, keep him.  

What made you decide on Rebif?  Just curious. I chose copaxone and so far that has been working really well for me.

Well Deb, you have finally crossed over to the other side of the mountain as our CL Lulu would say.  You are amongst the MS side of the family now and anything that I or any of the rest can do to help you through this emotional time, just say the word.

Take good care and please let us know how your appointment with the MS neuro goes.  We're in this together.  

Hugs,

Julie

Stay

[RedFlame]

Hi Debtea,  

It's difficult not knowing what you have and difficult being told what you have.  I am happy for you that you finally have a name for this monster and sad for you too.
Like ess said, welcome to the other side.

It does sound like this ms specilist is taking your case serious and working to get you in the best shape he/she can.  That's a good sign.

I think you will get used to the injections.  If the gauge of the needle is small it shouldn't hurt too much----well at least I hope not.

As far as your other appointment. Can you call them in the morning?  It's probably too late to cancel because they might charge you.  I'm really not sure what you should do.  I wouldn't want to go either.  It takes energy.  

I think call first thing at 8am and tell them about it, see what they say.

hugs
Red

[figuerpa]

Finally having a diagnosis is a relief in itself but then digesting that it is reality is another.

My sister knew she had MS before she got diagnosed but when they finally told her she broke down, and cried for hours just because it became reality.

If a second opinion will help you then go for it. Everyone deals with the shock of those words in a different way.

I am in the process of being diagnosed myself, I really want a diagnosis just so I will know that I have a cause for all of my symptoms, but if or when I hear those words, I don't know how I will feel.

I am sure it is emotional for everyone and they will have more input for you.


Good Luck

Paula

[essdipity]

Hey Debtea, welcome to the other side of the mountain. Your reactions are totally normal. It will take a while at your own pace to come to terms with this diagnosis, so just let yourself feel what you feel. And of course, come here often for support.

If your insurance covers another opinion, then by all means get one. That never hurts.

I'm so glad you will be getting good treatment and appropriate meds. The Rebif will not help your current symptoms, though it could well make relapses very spread out. The other meds can make you feel better.

Sending understanding hugs,
ess

[debtea]

Oh, and by the way, the doctor signed a paper for disabled parking...no more walking from the back of the parking lot and being too exhausted to shop...yeah!