I'm Finally DX

[slightlybroken]

I got my diagnosis today of MS. Wasn't really expecting it. He wants to continue the IV Solumedrol for another 6 months and repeat a MRI in April. Nothing was said of which kind of MS I have or DMDs. I have to go back in a few weeks for a IVSM treatment and I will bring it up then..but I was kind of in shock today..Everything went out the window (all the things I wanted to ask him and bring up at that appointment) when he said I did have MS.

Hope everyone is doing good!

[slightlybroken]

It has been a long time. I found this forum when MS was brought up by my GP. That was almost 5 years ago. It's hard to believe. If it wasn't for this forum, I wouldn't be diagnosed.

Through these 5 years..I went through 5 neuros. I was told by other neuros that there was nothing wrong with me & I was stressed. I had neuros that did nothing, and sat and watched me deteriorate.

Through these years I had to learn patients. My body was stubborn and was not willing to give up the evidence easily. What made my case a little more difficult was my other health issues which lead to a vena cava filter being placed in my chest, so that prevented me from going on the 3T MRI machines. I found out recently, that when I do get an MRI on a 1.5T, they cut my stay in it by 5 minutes just because I have the filter. (Even though my filter is approved for the 3T)

My attack is more in the spine and the optic nerve. The 1.5T can not see the damage in the spine but an SSEP picked up on it. I also have an abnormal VEP now. Back in 2007, these test were normal. So remember limbolanders to have them redo test even if you've had them before. Just because they were normal in the beginning, doesn't mean they will stay that way. My neuro believes I was just feeling the damage before they could pick up on it.

I'm still adjusting to the DX. I caught myself saying yesterday.. "If this is MS" Maybe I'm in denial or in disbelief about the whole thing. I'm hurting right now cause I'm due for a IVSM. The neuro wants me in every 30 days, but my next appointment is over the 30 day marker. They are going to try to fit me in faster if they can (fingers crossed). Right now..I'm reverting back to my spastic self. When I get this way, my Baclofen doesn't seem to touch it. BLAH!

Thank You All. You guys don't know what you have meant to me through these years. You have supported me & have helped me when I wanted to give up. Thanks for the HUGS & HUGS back.  

[bubbles_04]

I totally understand what you mean and I'm really sorry to hear you are now "official". I was the same... I already thought it might be MS but when the words were said... I'm afraid you have MS.... All I could do was cry.... but 4 days on I'm not crying anymore..... I'm still upset BUT now you know you can start to tackle it!! You'll be in a better state of mind by your next appointment! We both will :).

[grgo]

My thoughts are with you! I will never forget the day I was diagnosed!!!
I am sorry and I wish I was the last person in the world to get this news!

[rendean]

So glad your diagnosis struggle up the mountain is over. Welcome to the other side!! Sorry that it is MS.

You finally have the long awaited dx now comes the rollsercoaster of emotions but doublevision just posted a link to a book online. Perfect timing for you and so many new members here.

Sending tons of hugs,
Ren

[Guitar_grrrl]

Wow, wow, WOW!  It's been a long journey, and now you FINALLY have an answer.  I'm sorry it's MS, but I'm glad you're facing a named enemy.  I hope you're starting some kind of DMD soon.  

Big Hugs!
Lisa

[michelleric]

So sorry to hear your official diagnosis.  You have not felt well for so long, and finally the day is here to get the answer.

It is so hard to hear.  I am thinking of you,

Michelle

[summerluvr]

sending hugs.   Words don't really matter at this moment. I hope you have a support system around you of close friends and family. They are the ones who can lift you up when you feel bad, and help you with the day to day when you need help.  don't be afraid to ask them most people want to do something but don't know what to do!

[Jacksmom516]

I am so sorry for your dx but at least now that you have it you can move forward with treatments.  Even when you are prepared hearing those words makes all thoughts leave your head -  
Regroup - make another appt to ask your questions and keep us posted here on what is happening.

Your tenacity at finding an answer shows me that you will have the same tenacity at treating this thing!

All my thoughts
Tracy

[sllowe]

Slightly-B,

I couldn't believe my eyes when seeing this  - this a.m. I had to look, and re-look to make sure you were the poster!

Holy Cow - what a long journey for you! I'm in shock, and happy all at the same time. Not happy about the MS of course, just that you finally know for certain.

All -
Slightly B has been on this journey for so many years, and she's been through so very much including other medical probs to contend with as well. Her stamina is noble to say the least.

Glad you hung in there all this time, and I'm happy you can finally treat this beast.

(((Hugs))) to you, SB :) Finally!
-shell

[ku111]

I am sorry for your diagnosis but so happy that you have answers and treatment options!  I am wishing you the best and sending many positive thought your way!

[Sidesteps]

I posted a note on your page -

(((hugs)))

[Sumanadevii]

Hugs from me, too!

I hope he gets you on a DMD fast!!  Like today!!!!

It does sound like he is attacking the MS aggressively with steroids for six months...Almost like my specialist but she wanted two years.  I only lasted I think fourteen months then tried Actar Gel..not soon after I went on Tysabri...

So, my story and the Tysabri is doing good things but I ain't sharing until I am sure after six treatments!!!

Keep us updated.  I remember being relieved at the dx but sooooo angry at the first neuro...I still am but I will have my day in court!  Your emotions may run all over the map.  I finally kept a private journal which helped me a lot..Sharing on the board, too.

[Lulu54]

Oh my goodness ! I thought this day would never come.  It sure has been one heck of a long climb up this mountain but you made it..   Wow, sb.  I am almost speechless but very happy for you. Welcome to this side of the mountain.  Hugs and more hugs, L