Sad face - no question, just sharing

[ashleyPT]

I saw a new great MS neuro who I really liked a couple of weeks ago.  She stated I was textbook MS with my history for the past 4 years, but that she didn't start DMD treatment until she would be able to monitor disease progression on an MRI.  My MRIs are normal, but she wanted my first 3T MRI and some neuropsych testing.  The T3 MRI came back normal today, and she said normally she feels good about telling people that, but in my case it's just frustrating.

[steph74]

Hi Ashley,

I'm in the exact same boat.  My neuro said the same thing to me, too.  "Normally I feel good about saying it's clear, but in your case it would be nice to have the confirmation."

I know how you feel.  I've been having these sx for 7 years, and over the past year or so they've gotten markedly worse.  Yet, my MRI (including the "top to bottom" 3T) remains perfect.  My neuro says it "looks, sounds, smells, and tastes like MS" in a clinical way, but without MRI evidence, there's no dx in store for me...

It sounds like you like and trust your doctor.  What is her advice to you at this point?  Mine told me I'm in a holding pattern.

It's hard to get your hopes up of figuring out a cause.  I had what appeared to be ON last month and the ophthamologist suggested a new MRI.  I said no--it's just not worth it, especially since my sx were so mild for that.

Stephanie

P.S.  I'm also in NoVA.

[ashleyPT]

Thanks for the support guys.  I have moved around a lot in the past few years, seen about 7 neuros in all, since every time I moved I had to start over.  I am finally settled.  I am not frustrated with the neuro.  She is making sense to me.  She just seemed so hopeful that a 3T MRI would be the end of all of this, that I made the mistake of getting my hopes up too.

[sg40]

Can you go see another neuro? The diagnosis is a good start, but not much help if you aren't going to be treated.

[Lulu54]

Ashley,
It has to be so difficult for both of you to wait this out.  Can't we convince her to imagine this is 20 years ago before MRI's were available and she could dx you on your clinical history?  

Hang in there,
Lulu

[PastorDan]

Perhaps the neuropsych testing will help her make the leap into the current decade.

[lovemy6monkeys]

I'm sorry. It is so hard to not have MRI evidence of the symptoms we are feeling every day  :-(

((hugs))

~Jess