advertisement
Reply
 
Thread Tools Display Modes
Old 04-30-2009, 09:43 AM #21
Riverwild's Avatar
Riverwild Riverwild is offline
Magnate
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Default

Same here Beary-ON with NO previous symptoms.

I did have a facial injury in a pool accident that caused temporary nerve damage similar to Bell's Palsy, and the neuro took that as the first incident as disseminated by time and area of disability. It made me very angry because it had NOTHING to do with MS, and I felt he was just looking for anything he could write down to back up his diagnosis. Even my LP wasn't enough to back up diagnosis. I made him write in my records that I disagreed with his interpretation of the facial injury and had my GP write a letter backing that up.

It made him wait for the second relapse...which came in three months...and sealed the deal, but it got me past my start date of my disability insurance policy!!
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
Riverwild is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Bearygood (04-30-2009)

advertisement
Old 04-30-2009, 10:14 AM #22
Bearygood Bearygood is offline
Member
 
Join Date: Jan 2008
Posts: 970
15 yr Member
Bearygood Bearygood is offline
Member
 
Join Date: Jan 2008
Posts: 970
15 yr Member
Default

Quote:
Originally Posted by Riverwild View Post
I felt he was just looking for anything he could write down to back up his diagnosis.
Me too, RW. I walked away with "You've probably had MS for a very long time." Okay, maybe -- but maybe not.

After dx I would tell people that the shortest route to an MS dx is ON if there is evidence on the MRI to support it. I still feel that way for the most part and have even helped one person finally get a dx because of that BUT I have since seen many cases similar to mine where the doctors have not been willing to render a dx, I think possibly because of the absence of relapses.

An LP was never even mentioned...not that I'm complaining!
Bearygood is offline   Reply With QuoteReply With Quote
Old 04-30-2009, 10:50 AM #23
tkrik's Avatar
tkrik tkrik is offline
Wise Elder
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
tkrik tkrik is offline
Wise Elder
tkrik's Avatar
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
Default

3 years diagnosed and no changes in my brain MRI for the past 2 years. I do have spinal lesions (t-spine) but my neuro doesn't generally do follow ups on spinal lesions simply because they are harder to identify. Heck, there is a lot of stuff compacted in that small space.
tkrik is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Bearygood (04-30-2009)
Old 04-30-2009, 11:19 AM #24
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

I agree with those who said that here is little or no correlation between lesion load and disability.

I have never known how many lesions I've had, but I do know that I am SPMS, and have had no exacerbations since my last MRI, in 2000/2001?

I may have one or two or a million lesions added, in the last 6 yrs, on LDN, but I have had almost nil progression of MS disability.....unless you count the disability of aging..

I have said and I still say, that, if you have been DXed with MS and you don't suspect anything else, or are in a Trial, an MRI is redundant, useless, unnecessary and expensive..
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Bearygood (04-30-2009), tkrik (04-30-2009)
Old 04-30-2009, 12:41 PM #25
Bearygood Bearygood is offline
Member
 
Join Date: Jan 2008
Posts: 970
15 yr Member
Bearygood Bearygood is offline
Member
 
Join Date: Jan 2008
Posts: 970
15 yr Member
Default

Quote:
Originally Posted by SallyC View Post
I have said and I still say, that, if you have been DXed with MS and you don't suspect anything else, or are in a Trial, an MRI is redundant, useless, unnecessary and expensive..
Not sure how I feel about this. I can see myself not going every year but I don't know that I'd feel good about never getting a brain MRI again, even if the reason is just because I'm curious! But I do see your point! Especially since I'm not on drugs.

Though, when it comes to the orbits, I don't agree. My first follow-up MRI post ON showed tangible improvement and was helpful to my neuro-ophthalmologist. My next one will be in a week or two and I know there are certain things they hope to see. Don't ask me exactly what they are though -- I forgot! Must be that brain lesion.
Bearygood is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (04-30-2009)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Question: Who's Had TOS The Longest? tshadow Thoracic Outlet Syndrome 32 06-06-2008 08:12 PM
Lyme disease presenting as Schizophrenia SarahO Schizophrenia 0 12-31-2007 07:16 PM
Dr. Onders presenting at Leadership Summit BobbyB ALS News & Research 0 10-13-2007 08:04 AM


All times are GMT -5. The time now is 02:13 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.