interesting email from my neuro

[sunshine008]

hi hope everyones doing ok

so,my neurologist and I email back and forth often. He isnt always available to see me. So, after my latest "clean" mri just the multiple lesions from last time.... I was awaiting his thoughts.... also on the thinning corpus collasum.

So, he emailed and basically stated he'd like me to add in a dmd when i'm ready.... that with "progressive or increased MS" treating early is what matters. That was his way of saying hey your progressive. He said an mri without new lesions means nothing, because there are times that isn't all thats' there, and also ppl progress without onset of new lesions.

so, all in all interesting.... he did agree to let me drop off cards and flyers since i'll be running groups for the MS Society. Hes a really good doctor. He takes and makes the time even when he can't fit you in the schedule. From what i've been learning not many do this.

So, he said either way i'll always advocate for you and support you if you add in another or do not.

So, i'm still pondering the email........

just felt like sharing with ppl that umm "get it"

[Sequoia]

Sounds like you've got a good neurologist!

BTW, everyone who has MS is "progressive"...it's the nature of the disease to progress, even during lengthy remissions.

That's not the same as being diagnosed with PPMS, or PRMS, or SPMS.

You might want to ask your neuro to clarify what he meant. However, it does sound to my layperson's ear like starting a DMD would be a good idea.

Best wishes,

Sequoia

[sunshine008]

exactly and yes I did email him bk.... yet when him and I began he said i don't believe in rr dx, or the others. he said simply it progresses.

I never get a baseline anymore, haven't for over a year now. the relapses started once every 2 mos. went down to 1mos. than 3 weeks every 2 and than weekly into everyday for past year.

it was a very organized decline and yes i know we're all progressive in a sense. he meant more in his wording i dont' relapse/get well anymore haven't since before i met him.

iv'e heard of this the false sense of security in an mri without new lesions..... yet still presenting with new symptoms or contd damage results. at least he isnt' one of those doctors that make you think you loosing it! lol

[inmoni5]

iv'e heard of this the false sense of security in an mri without new lesions..... yet still presenting with new symptoms or contd damage results. at least he isnt' one of those doctors that make you think you loosing it! lol

HAHAHA no sunshine that's my area of expertise!! That was my ms specialist that made me feel like I was loosing it. Thank goodness I don't see her anymore.

[sunshine008]

lol thats' funny........ i'm lucky with my neuro he never makes me feel like i'm nutty. even when i anti'd up that i hear music at night......