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Hi all

Posted: Sat May 26, 2007 12:57 am
by phred421
Hello. im Fred and my fiance was diagnosed with MS april 3rd, this year. We were in a way lucky as a bout of optic neritis brought her to an eye doctor who QUICKLY picked up on the possible MS link and within 3 hrs of her entering his office, we were at a nerologist. (I say lucky because we have talked with so many people who had difficulty with medical professionals not understanding MS...not because of her eventual diagnosis.) She has also been diagnosed at a point where her nerologist says there was not evidence of much legion activity in her MRI's. (is it common that MRI images are not shared with us?)

I'm not sure she will be on here in the forums much as she is overwhelmed with info and decisions etc. I have to warn u that i will be a regular here though. lol One area where i can use a lot of advice tips info is in helping her cope. I have spent more time that last month trying to educate myself to know MS and what it is capable of than i have at work prolly. (LOL, i thought i was internet savy...u all put me to shame...and i love u for it!! hehe) Like prolly everyone here i dont see my hunger for knowledge on this subsiding till they cure it and this site does a great job keeping food on the table hehe. Hopefully I'll be able to contribute but in the very least please know i will be eternally greatful for all the hard work and solid info people put into this site.

Posted: Sat May 26, 2007 2:18 am
by Niko
Welcome to you and your fiance! I applaud your enthusiasm in seeking information!

You did ask is it common that MRI images are not shared with us?

Doctors and their practices vary, that's for sure, but for me I've never seen nor been given my MRI pics. Just told about how many lesions and where they are.

Again, welcome aboard!

cheers --

Niko 8)

DXd RRMS 2000
Betaseron since 2002
Ritalin-SR since 2006

Welcome, phred

Posted: Sat May 26, 2007 5:48 am
by lyndacarol
Fred, I admire you for your commitment to your "fiance." This is not an easy journey and we all know you could bail out now (many do after vows are said). This trip is only for the courageous.

Welcome to this site and to learning LOTS about this monster. And, who knows, YOU may be the one who discovers some vital bit of information that will benefit all of us! Do not hesitate to join in.

Posted: Sat May 26, 2007 6:55 am
by Lyon
Hi Fred, welcome!

Not to be blunt but society has taught you to be polite and to quietly accept everything you are told. You and your fiance need to put that behind you and make your demands clear. I don't know if they have to but we've always made it clear that we want copies of the mri's and they've supplied them.

Obviously an MS diagnosis never becomes comfortable or acceptible but the passing of time seems to wear down the edges a little.

Bob

TY

Posted: Sat May 26, 2007 7:35 pm
by phred421
I really appreciate your words. To be honest i could not imagine anything that could keep me from wanting to spend the rest of my life with carrie. i have never in my life known anyone who did not just love her. she is amazing and deserves any of my efforts.

One thing i will say is that neither of us r afraid to speak up lol. we r both stubborn italians hehe. That being said this is all new to us and even i am a little overwhelmed and i dont have to deal with the actual monster. But my mom is a nurse who has her BSN in geriatrics. I have been surrounded by medical professionals my whole life. and even though i know (and pray all your doctors are) some amazing caring doctors and nurses, for the most part though i must admit i feel most fit into just the opposite steriotype. Anyways, i truly try to stay conscience of the fact that i am not the patient!! I dont want to upset his delicate ego and create an uncomfortableness between her and her doc.

So yeah, ima little long winded hehe. anyways ty for the welcomes and i look forward to getting to know u all better :)