Get to talk to neurologist today. Any suggestions on what to ask?

[tammy197238]

I am finishing my last does of IV steroids...then am going on 2 weeks of prednisone.  It hasnt been bad except the first night i couldn't sleep so they gave me ambien to take home last night.  It worked well.  I got 7 hrs sleep.  I have about 4 questions I wrote down to ask but i know i will think of more after I leave then be frustrated.  "And some of them I dont feel comfortable asking.  I dont know why I dont feel this diagnosis is right, or if it is just that I dont want it to be right.  But when I read the boards and see others people symptoms mine seem different.  I have no numbness or tingling.  I have no issues with my legs or spasticity.   My symptoms which have all gone except nystagmus were stuttering when I talked, tremors, neck extentions, memory and focus were off.  I did talk to the nurse yesterday while she was doing the infusion and told her i hadn't had a chance to talk to the doctor about any of results and even though the apointment i had with him was today I just wanted to know if it was a yes or no or probable on the diagnosis.  She said it was a yes, and went on to say I had 5 oligoclonal bands and he reviewed the MRI and thats that I guess.  I guess maybe once I hear it from him today maybe I will get past this not believing issue and just deal with it and move on.  I hate being on steroids for another 2 weeks.  I just feel like crying and want someone to hold me and tell me it will all be fine but I feel like I am supposed to be strong for my family.  And if I freak out then they will and I dont want to be a burden on anyone.  I dont want them to have to worry, especially the kids.

[twopack]

Hi Tammy.  Shell is soooo right about this.  MS has many different faces.  Sometimes too, we don't realize we have been having a symptom until we understand more about what's happening.  Things we (and doctors) gave other explanations once upon a time can begin to make more sense as early unrecognized symptoms once we live with MS for a while.

I've come to think MS is CLASSIC only in the way legends like Shakespeare and Beethoven are.  They’re good to study so you understand where wonderful new things spring from BUT it’s a hard sell for today’s consumer in the original form.

-------------------------------------------------
Okay, I got pulled away this morning thinking your appointment was tomorrow and now it is tomorrow and this may not even make sense.  It’s a good thing Shell and Lu covered it so well.

That ONE question was THE one to ask.  From here on out I would encourage you to ask any and every question you have without reservation.  If they haven’t heard it before, they sure should have.  Then, does the office have a nurse contact person available to answer questions that come up later?  I would think the office expects newly diagnosed patients to be full of questions.

On the other hand, forums like this one can provide a wealth of information you will never find in any office.  There are some things life teaches better than schooling.  My sister has found this to be true on the breast cancer forum she visits too.  People living through similar situations find endless ways of dealing with all aspects of the experience.  And if a solution starts to fall apart in time?  Someone will come up with a new possibility to try.  No doubt that will be you one day down the line.

I remember so well the roller coaster you describe.  It’s a long ride for the money and I found I had to finally force it to stop after a year so I could start living again.  It is time you need but I’m guessing those kids are going to yank you off before you indulge as long as a year.  They’re good for that!  Like Sumana, I have great compassion for young mothers with MS.  Still, they surely add a positive spin from time to time.

I’ll end the ramble now.  The others have really welcomed you to this side so well anyway.  I guess that IVSM insomnia is taking its turn at my house tonight.  LOL

Mary

BTW, I’ve heard good reports about using Avonex.  All the injectables are scary at first thought.  I think Avonex would be my first choice after Copaxone though.

[Lulu54]

Tammy, welclome to the other side of the mountain.  We have quite the group over on this side and it continues to grow.

Allow yourself time, and lots of it, to wrap your mind around the idea that you have MS.  It takes time to sort it out intellectually and emotionally.  Don't push yourself too hard- remember to be kind to yourself.

If you husband is willing, encourage him to start learning too.  I know some wonderful couples who live with MS as a constant companion.  This disease doesn't have to destroy life as you know it.

The drugs all have assistance programs.  I am on copaxone and they pay my $50/month copay.  I am paying nothing out of my own pocket-- the insurance covers the balance.  

Take some time to have a pity party - they can be healing, especially if it involves lots of ice cream, quiet walks, or a soothing glass of wine.

Let us know what we can do for you - we've been there, done it and can certainly empathize.

hugs, Lulu

[Sumanadevii]

I didn't fit into the dx box on MS.  I mean, who has one complaint...back pain?  So, all our stories are different...and few are alike.

As far as the steroids go...The IVSM is the hard part.  What you are taking now is very low dose.  Sometimes it isn't even given (I don't take the taper).  It is only given as a way to slowly bring you down from the IVSM but will be nothing like what you have experienced from the infusion.

Some of the meds for MS can be had from the drug companies for little or nothing.  I know Rebif paid our $2,500.00 deductible with no questions or financial forms.  If you need more help and fill out the financial forms, I understand it is given free.  We pay just $30.00 per month.  It is not the only drug company that offers help.  You just need to reach out and ask for help.

I know you are scared and heartbroken.  I am so sorry for the dx.  I know this board will be here for you ....and listen as you continue your journey.  For me, I feel for any, especially a  young mother with so many to care for....My our strength surround you.

Sumana

[tammy197238]

sllowe, Yes it sounds all to familiar.  Add to that I am ok with it for a couple of days...then I break down crying the next, then I get grouchy with my husband because he tells me to quit looking at stuff on the internet because it just worries me.  I feel like an emotional rollercoaster. Knowing that both you and lulu doubt, and feel like maybe the doctor is missing something makes me feel better.  

My neuro did give me a definite clinical diagnosis of MS today.  I finished my last dose of iv Solumedrol.  I start 2 weeks of prednisone tomorrow.  He gave me a support kit for Avonex which will be a once a week injection.  They said its expensive but they have financial assistance that can help with cost.  A nurse will come over and show me how to give myself the injections. (scary!)    Does anyone else have experience with this medication?

I also wondered if anyone knows since I have a definite diagnosis if I might qualify for Medicare or Medicaid or anything that might help with cost.  My husband and I both have full times job.  He carries the insurance as they dont offer it at my place of employment.  But the deductible is 2500. and out of pocket 4000.00.  We have 4 children and dont have alot of extra money to handle this.  We are already stressing over the bills rolling in!!

Thanks to everyone here for giving me your support and guidance through these past few weeks of uncertainty and stress.  It really means so much more than you can ever realize.

[Lulu54]

Tammy,

shell pretty much nailed her answer - we all have been where you are.  Full of doubt- wondering how on earth such a smart doctor could be so wrong.  I routinely ask my neuro if he is sure that I have MS.  He must get tired of my doubting and quesitoning him.


Life  with MS is an adventure, but so is life in general.  Regardless of what health obstacles get thrown at us, we manage to find a way to continue forward, and especially if you still have children at home.

The fact that you don't match any of the rest of us here just reinforces how unique MS really is.  The location of those pesky lesions makes all the difference in the world as to what part of our body is affected.  We are all so different, yet so alike.  We have the same worries, concerns and aprehensions about our futures.

I hope we will see you around here often and let us help you figure out what comes next.

we're with you,
Lulu

[sllowe]

Tammmmy!!!!!!!!!

I'm going to ramble, but I'd like to share with you that I absolutely did not have a lot of what others experienced on the forum either. TOTALLY doubted my dx. Fought it tooth and nail - to the tune of the docs would just look at me when I asked questions over and over.

They'd tell me a name of what and why I was experiencing what I was experiencing and I'd seek another reason.  Isn't it just...? Well, what about...?   (to me) I knew for sure I had a stroke, I knew for sure I just must of been overdoing it. I knew for sure this was not what they were saying.  Little did I know, I knew nothing about the disease.

I wasn't upset about it - just figured they were wrong and missing something. Surely  they could just give me something so I could get back on track. And, I wanted them to do it quickly, lol I had "things" to do.  Sound familiar?

This may help you. No two people are exactly alike. Your doctor has to look into all the other possibilities. It's great you are not getting all the spasms, and other issues and you are now experiencing some normalcy.... Many MSers experience this - that is where you are indeed in good company :)

You can ask your doctor what has led to the dx. That you just need to hear it so you can wrap your head around it. Don't worry about being a burden on your family - you can lead a perfectly good life with MS - this I promise!

Education and awareness of the disease will shed new light on how your feeling right now. Your appt. today will help too.

Hope a little of my story helps you out :)
Please let us know how you make out,
-Shell