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Multiple Sclerosis Community
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294425 tn?1288531995

It's Official Now

Hi All..:)

I apologize in advance if this ends up being long.  Just felt I needed to be in a place where people understand...

I saw the neuro yesterday.  I had the MRI's of my C and T spine, and the report was essentially negative.  He pulled up the MRI to go over it with me, show me things and see if I had any questions.  How cool was that?  He said there was nothing obvious on the MRI's, but that in no way meant that there weren't things going on that we just are unable to see right now.  (All I could think of was how Quix had "nothing" in her cord till they did the 3T MRI and it all of a sudden picked up a bunch of lesions.)  He said all my blood was negative, as he expected.  I told him about the weirdness with my eye this past week, and how during the MRI I could feel some of the vibrations much more strongly on my left side than my right.  It was freaky.

He just looked at me and said "This is MS and I'd really like to start treating you immediately."  Once he is confident in the diagnosis, he said he likes to be aggressive to try to reduce permanent deficits if possible.  I will be starting on Rebif once everything gets set up by the "Rebif nurse".  

So here's the thing.... I thought I was so ready for this appointment, come what may.  I knew it was either going to be MS or that we were back to square one and not knowing what's going on.  He had certainly paved the road and not pulled any punches the first time I saw him.  I've had 3 weeks to make peace with the fact that this was a distinct possibility, and frankly the main thing I had felt thus far was relief that I wasn't crazy and interest in the whole subject, which is fascinating in a way to me.  And yet I still found myself falling apart in the office... I was horrified as I felt the tears, but I couldn't make them stop... :)  Apparently I had the nerve to still be surprised to hear the words....  

He and his staff were wonderful to me - very kind and gracious.  He told me they will take good care of me, and I know in my heart they will.  He still wants me to get the spinal tap, to see if there are any oligoclonal bands.  But even if there aren't we will continue treating as planned.  I thank God that I have a doctor who doesn't just look at the results of tests on paper, but looks at the whole picture and the whole person.  Who is cautious enough to rule out all the variables, but then wants to get on top of it as soon as possible.

Still waiting for the Provigil to be approved, but he gave me some samples for in the meantime.  I took 1/2 of one this morning (thank you for the words of caution, Quix!) and couldn't believe just how much better even that made me feel.  Then I finally realized just how exhausted I've really been for almost 6 months now.

So now I'm reading more intently since it's no longer just a possibility.  I'm going to review my insurance coverage (thank you to whoever it was who recently posted about that - I would have never thought about the prescription issue!) and check into having an FMLA form on hand just in case.  

Yesterday was bad, but today I'm in a good place.  I know I'll be OK no matter how this goes - I feel very at peace today somehow.  I know I will have bad days and bad stretches ahead, but I also know that I am blessed and fortunate in too many ways to count.  It is so wonderful to have this group here for support and advice.  I will go thru the archives as I get time, but if anyone has any advice or thoughts on either Rebif or spinal taps, feel free to toss it out there... :)  Hope you all have a great day!

Rita

  
41 Responses
233622 tn?1279338505

Sorry to hear of the dx but glad you finally know.  My dx was 2 weeks ago. I started Avonex last week. My second injection will be tomorrow evening. I am STILL trying to digest all of this in my mind.  I still feel like it really did NOT happen.

Or am in denial I suppose. The worst part for me is knowing how this affects those around me.  I have always been the one taking care of my husband and 7 children....so now that I have this DX I am very concerned about what will happen.  Especially since my legs and vision are most affected.

But.....we just do what we have to in order to get through and deal with it.  Did your doctor give you a choice of what med to take? Mine really didn't.


LA
220917 tn?1309788081
Oh, Rita!

I'm so very sorry for you.  What a lot to get your mind around.  Even though this is what you've been expecting.  Of course you're feeling the way you do. Such a devastating blow.

I am touched to read how compassionate your doctor seemed.  I'm glad he was there for you.  And, that he's going to take care of you, and immediately.  Wonderful!  He sounds terrific.  Just what you need.

We're here, too.  It will take time for all this to sink in, I'm sure.  We'll still be here!

Feel well.

Zilla*
335728 tn?1331418012
I am really sorry to read that you have had a positive diagnosis of MS but I am happy for you that you are out of limboland.

You will no doubt go through a myriad of emotions in the next few weeks but remember that for those times when you can't handle it we are here.

It appears that you have a wonderful caring doctor and I certainly hope that your good care continues.  I want to wish you the best of luck in the next part of your journey with MS and plese remember that we are here for you!

Lots of Hugs,

Rena
Avatar universal
SORRY TO HEAR ABOUT THE DIAGNOSIS,BUT YOU HAVE LEFT THE REALM OF THE UNKNOWN AND THE UNKNOWN IS WORSE THAN HEARING THE WORDS MS.

YOU HAVE AN AWESOME NEURO WHO HAS RECONIZED THAT NOT EVERYTHING SHOWS ON THE MRI'S.

5% OF MSERS ARE LESION FREE AT SOME POINT.

IT HAD TO BE EMOTIONAL,EVEN THOUGH WE KNOW WHAT THEY ARE LOOKING FOR THAT FINAL DX,STILL IS A SHOCKER.

MS IS LIVEABLE AND WE HAVE OUR GOOD DAYS AND BAD DAYS.

REBIF IS WHAT I'M ON,I TAKE IT AT NIGHT BEFORE I GO TO BED,WITH TYLENOL AN HOUR BEFORE HAND,THAT WAY ANY SIDE EFFECTS I SLEEP THROUGH.
I WAS VERY FORTUNATE THAT I DIDN'T HAVE ANY SIDE EFFECTS FROM IT LIKE THE FLU-LIKE SYMPTOMS AND SO FORTH.

WITH REBIF IT COMES WITH AN AUTO-INJECTOR YOU DON'T EVEN SEE THE NEEDLE.IT JUST GOES UNDER THE SKIN.I DO MY SHOTS ON TUESDAY,THURSDAY AND SUNDAY,THAT WAY I HAVE THE WEEKENDS OFF.

PLEASE CHECK WITH YOUR INSURANCE AND THERES MANY PHARMACUTICAL COMPANIES THAT WORK WITH US TO GET OUR MEDS.

TRY TO FOCUS ON THE POSITIVE THINGS IN LIFE AND REMEMBER THAT MANY GO INTO REMISSION

T-LYNN
420469 tn?1217650963
I'm sorry to hear about your dx, but like everyone else has said, I imagine knowing is a lot better than not. At least you can be proactive now, start meds, and get relief from some symptoms (through other meds).

Another story of a doctor willing to diagnose even while they don't have any "proof" gives me confidence that, whatever my issue is (I'm undiagnosed), someone will eventually hear me.

Thanks for the inspiration.

Christine
195469 tn?1388326488
Sweetheart...I guess today was one of those day's that I needed a good cry.  I cried like a baby when I read your post.  Rita, I am SO SORRY that this is MS.  I know that it's a relief that you finally have an answer, but I know from experience how this news will effect your life, so I weep for you and with you.

Rita, if I was with you right now, you and I could have a good cry together.  I would hold you like a mother holds her child and offer you a soft shoulder to lean on.  I am so touched by your story and admire you SO much for the way you say you will carry on, despite the diagnosis.

Rita, there will be times that you will grieve and grieve deeply and openly.  Don't stop those feelings.  Let them come out, so you can deal with them.  You may find that you weep at the most odd times and in the weirdest places, so if you do...just excuse yourself and go to the lady's room and let it all out.  Find a close friend near you that can offer you some good 'listening' ears.  You need to talk out your feelings.

I take great comfort in your strength and your resolve to fight this dam (n) disease, Rita.  I wish there was something I could do for you, to let you know that you have a friend that DOES care and will help you in any way.  That "friend" comes in the form of this Forum and all those who care so deeply for you here.

Every step you take Ria, we take with you.  We are here for you, day or night.  If you would allow me...I would like to send some prayers up to the Heavens, for you and your family.  

This indeed isn't the greatest news, but at least this is a disease that you can fight.  One day, WE WILL ALL WIN our fight against this disease and we WILL get together, all in one room, even if this lady has to mortgage her house for plane tickets; for each and everyone of you to be present, to celebrate our victory.  I trust that a cure and a reversal of the damage will be in our lifetimes.  I hang onto to that thought, for courage to face another day.

God love you sweetheart and much love to your family.

BIG HUGSSSSSSS
Heather
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