Plain and Simple, I'm a Wreck

[sadie405]

Hi, Everyone--

After months of waiting I'm going in to see the MS specialist tomorrow. She's also a researcher and she's literally written textbooks on the disease so I think it's safe to say she'll know her stuff.
I'm this weird mixture of nerves and fatigue, and I'm slowly getting over a bug. I almost don't know what to hope for.

I'm past hoping for this past year's fatigue, clumsiness, spaciness, numbness, paralysis, muscle jerks,vision weirdness,etc to go away; I can't erase the tissue damage showing up on my scans and I accept that.

I guess... I hope... that this neuro's a decent human being who listens. She doesn't need to be Mister Rogers-- I'm just hoping for "not-an-*******."
I'm hoping I'll be able to articulate decently.

But let's be honest: Most of all, I'm really hoping for a diagnosis. It almost feels like, until it gets "named," this whole big mess of dysfunction is originating from within me; somehow I own it. The compilation of all this awfulness is  "Sadie's/Mommy's issues."  Whereas once it officially gets named I didn't do it/invent it/create it. It is something separate and identifiable that "happened" to me. Something that (sadly) happens to other people, too.

I'm not sure if I'll actually get a diagnosis though-- my LP was deemed negative and my VEPs were better than normal. Also because I have a +ANA and I used to have an autoimmune clotting disorder(but which 3 rheumatologists have told me I no longer have, and that nothing rheumatic is causing these symptoms.)

On the other hand then there is my uncle who is not a neuro but a very respected doc-- he told me that on clinical basis alone I already qualify for an MS diagnosis-- not to mention, I fit "the profile"  and I also have T2 lesions showing up on MRI in the "right" places.

ARgh.

It's hard enough having to say "No" to playing my girls(to use one of many examples)-- I'm tired of leaving doc's offices doubting myself, feeling like a hypochondriac on top of it. Feeling lost and lonely in the midst of this stupid  storm.

I want a name.


Sadie

[Sidesteps]

I'm hoping for a name for you. I am in limboland as well and see the MS specialist at the end of the month. She also has enough experience for me to feel like she has a lot of wisdom and, with that though, I am going to seek her wisdom on what is wrong with me. Like you, I hope for a "name" and to be able to actually FIGHT whatever that name is. I feel helpless feeling it degradate my mind and body so I am growing pretty anxious as this appointment draws near.

You can do this.

(((hugs)))

[sadie405]

Thanks so much for the kind words of support-- they really help!  I'll definitely post an update.

[cheesymum]

Wishing you all kinds of good luck and calm nerves and good articulation for tomorrow!  Crossing my fingers for you!  Alex (HVAC) and I also have neuro appointments tomorrow so we all be in the boat together.

Please update us after the appointment!

[zenhound]

Oh man, can I ever relate to this:
It almost feels like, until it gets "named," this whole big mess of dysfunction is originating from within me; somehow I own it. The compilation of all this awfulness is  "Sadie's/Mommy's issues."  Whereas once it officially gets named I didn't do it/invent it/create it. It is something separate and identifiable that "happened" to me. Something that (sadly) happens to other people, too.

Good luck tomorrow. I hope you have a good experience and walk away with a diagnosis and some sense of relief.

[Sarahsmom46]

I also want to throw in a good-luck for tomorrow.  Don't be intimidated because you need and must get answers.  It sounds like you are ready and able to discuss what is happeneing with you.  I remember my first experience with a neuro and I tried my best not to let him think I knew more than I did, but at the same time, I wasn't going to be foo-fooed either.  Ask questions and if he/she starts heading for the door, follow 'em.  :)  

Please update us when you come back from the appointment.  Your experience would be very helpful for others who are going through the same thing you are.  

My best.

Julie

[Lulu54]

Dear Sadie,
You so deserve a name to this plague that has descended on you.  You have so eloquently stated your wish here, and I hope you can do so when you see this doctor.  You didn't invent this "wrong" that your body is experiencing.  You are having a very real problem and it has exhausted you to find an answer.

Be ready for your appointment, tell this  doctor exactly what you have told us here.  Don't give up until you get an answer.  It's your future we're talking about and you're too important to quit now.

And good luck - we can all use a bit of that.

Lulu

[imsolucky]

Good luck tomorrow Sadie I hope you get a name. I will say a prayer for you and will be thinking of you hoping for the very best.