Time to find a new neuro! Run, don't walk!
So I have visable brain atrophy and postivie VER and my neur just let me go. He said there is nothing wrong with me...I am 45 and had ON in 2009 with left over vision loss. I felt like giving up but should I fight on? I have not been able to leave the house is 28 days due to the heat. Thanks Mary
That it is! Excellent bump!
I'm just bumping this up to the present - this is a great thread.
This makes me feel better. I have cognitive difficulties, which are invisible but a cause of great difficulty in my life. I went from a high-functioning senior manager to a person who can not conduct her own life - even with assistive technological aids
Yeah, they keep throwing that McDonald criteria in your face. They say "Oh you have 8 T2 lesions Not 9 lesions, sorry you Don't have MS". Bullchit!
To Cjacks ..thanks for bumping this up!
Great info! This especially hits home as the wacky neuro-otologist tries to take away my dx. Ain't no way in h*ll that's going to happen just because I don't have enough lesions, especially after reading this. I'll stick my neuro who has been absolutely amazing for me.
Ren
doesn't look like the VA neuro's see eye to eye with your doctor's thoughts! though most on this list know why they do not -- money based medical rationing plain and simple.
though they did get back on the "we need to start you on a DMD to err on the side of caution" treadmill recently. we'll see ...
interesting reading Heather, a good read
Glad to hear about your good news Heather. Good reading, good information Heather and all.
Bob :)
What a wonderful thread.. Bump Bump
Jo
Awsome info here,
It seems to me after reading all this, that this thread gives new meanning
to the phrase
MS IS ALWAYS ACTIVE!!!
I know we always knew that or always say it, But reading this thread really brings
it home.
So glad I did not miss this post. Thank you all for your contributions
Warkitten 2008
You can ask the neurologist, or ask the imaging clinic and they'll send a copy to your home address. Typically they won't do it until the neurologist has gone over your report first.
Thanks, that's reassuring. I haven't seen the radiologist's report for any of my MRIs. Is that a loaded question, to ask the neurologist for it?
Heather, this is great - I have never read it. I dont know how I missed it! Thanks and I do think it ought to go in the health pages also! Lynette
No, I think that the neuro's estimate is probably all right. The radiologist will comment if the virchow-robin spaces, or the ventricles, are larger than normal. I would trust the radiologist's opinion over the neuro when it comes to reading MRIs anyway.
bump and a comment.
Hmm, when my neuro was looking at my MRI (shortly after she gasped and said "Oh dear") I asked if there was atrophy. I hadn't read this thread, but I think Quixotic did mention atrophy in her MRI info. The Dr looked, pointed out that my ventricles are fairly small and that there's not a lot of room between cortex and skull, and said that no, atrophy doesn't appear to be a problem. Then she asked why I had asked that. I said I'd been reading about MS and just wondered.
From Heather's post, it sounds as if this casual check wasn't up to standards. I'd like to ask her to do a pixel count but am very wary of damaging our Dr/Pt relationship before I get a Dx. Any advice?
Thank you for sharing this information with us. I am so thrilled that you now have a Dr who is willing to help you get the disease modifying drugs that can help you. I am so thrilled that you have a caring neuro (see they are out there) we just have to find them.
Also for those that are not diagnosed it is a good reason to keep searching for the answers so that if it is indeed MS you can get on the disease modifying drugs early.
This whole thread was very enlightening, there is always so much to learn from each others experiences.
Thank you Heather for sharing this with us and everybody else for their imput.
Cheers,
Udkas.
Wow! it was slow with other posts today and I happened across this discussion. There is so much in herer I will have to read it again and again. Thanks Jensequitir for bringing it forward from the archives. - Lulu
BIG BUMP.....GOoooOD STUFF
Guys, I don't know how many of you receive the MSQR newsletter, but mine came in the mail yesterday. There's a dry, boring, scholarly article about diagnosing MS, and it talks about the new research with axon severing happening long before lesion formation.
But the article ends with the theory that new higher-Tesla MRI machines will solve all our diagnostic problems. I was a little irked. Would a super-dooper MRI be able to pick up axon breakage?
WOW! I've never seen this either!
I was reading it, and reading it, thinking now I know Heather is on Copax - what the? I'm confused! And finally, I noticed the date!
What a write up! Can we organize this into a health page somehow? Want me to help?
I'd be glad to.
Belated Thanks Heather, this Dr. gal is an angel, how far from here to your place honey? Can we meet up for an appt. and lunch? and dinner? Don't get me wrong, I have a Neuro, but would like to not have to take out my crowbar at every appt to get into the important stuff!
xoxo
Shell