MRI results

[candy158]

just a question to ask you guys, before I go to Vancouver again.  

Do you HAVE TO HAVE lesions on your spine to have a full dx for MS?   A while ago we were tol NO, but now they seem to change their mind.    If that is the case, then what the heck is going on with me ????

thanks for letting me spout off  ........:(

Candy

[Mike_Shuswap]

Nope, I've never lived in PG nor McBride, although I've traveled through both towns many times.

Just last Sept as a matter of fact on our way to Haida Gwaii we stayed at the city camp site in McBride overnight.

There are lots of Mikes in the world, and shuswap is just the region I live in.

Cheers

Mike

[Guitar_grrrl]

Lemme get this straight - your neuro is perplexed because you have numbness on your tongue, but you have no spinal lesions?  I'm really trying to suppress a laugh, here! As murky as the connection is between symptoms and lesions goes, I'm pretty sure tongue numbness has nothing to do with spinal lesions, and would point more to brainstem (think Trigeminal nerve) lesions.

I was diagnosed without visible spinal lesions, though my neurological exam points to spinal lesions.  My neuro said "I don't care if they don't show up on MRI, you have spinal lesions, no matter how freaking small." I have few lesions in my brain.

Good grief, woman, haven't you been through enough!?

Sending good thoughts on this bump in the road...

[candy158]

Thanks Mike, and Ren, and everyone else.......

Mike, I was wondering if you ever lived in McBride/or PG ... cause your name has ALWAYS sounded familiar to me... and when you mentioned a fellow BC'er, I wondered again.....

This UBC appt. is my 3rd now, the one a year ago January, was for the 6th opinion, and that is where my dx' came from.  That same Dr. is now wanting yet another opinion, and I'm not sure why she is PERPLEXED, but, I guess she is allowed.  I'm just tired of all of this, and the needles hurt, and I don't like having all these little sore spots on me....:( ....

I know it will get easier, or so we have all been told, but I sure don't like it right now........


Hoping to hear from you,
All the best to you and your stuff that you are into,,,,

Candy

[Mike_Shuswap]

Candy,

I'm trying to find the right words to be of help to you, but I'm kinda tangled up in other things right now.

I just want to say that as a fellow BCer and patient of the UBC MS clinic I'm hopeful you'll get the answers (again) that you need.

We're all on your side, most likely even the doctors who are causing you all this confusion are too.

And to answer your question, I agree with others who have stated NO. I have had a C spine MRI that showed no lesions, and have never had a T spine MRI.....and I have been dx'd with MS by a doctor in the UBC MS clinic.

all the best

Mike

[rendean]

Candy,
Hang in there! You CAN do this. You have a great support system and they can and will help with this bump in the road.

Don't give up know. Look how much you have accomplished! Besides, you've got that beautiful grand baby to play with. You need to get better for more quality time in your life.

Always here for a shoulder to cry or a place to vent......

REN
Many hugs being sent your way!!

[candy158]

Thank you all for your opinions.  I agree with you all, it is the darn Dr's that won't seem to.  JJ, I did get a new neuro, this is her..LOL .... she is at UBC in Vancouver, and when I called about my numb tongue and other symptons, I wondered if I was having yet another relapse..... the nurse checked with Dr. Devonshire, and the call back said, " She is perplexed and wants me to see yet another neuro because my spine scan was clear.  

I just don't get it,

Ren, I thought that we had a solid dx ... especially when she did say RRMS, not SPMS, and she put me on Copaxone.... I actually thought I was seeing a light at the end of this 5 year tunnel, but now it is fogged in again.   I don't know if I can take a bunch more farting around by the Dr's........ guys, I am not sure....

Candy

[rendean]

Hi, I am sorry you are having such a difficult time. As for the question you asked, and JJ reinforced, you do NOT have to have lesions in the spine.

I do not have lesions in my spine, only in the brain. I do have trouble ambulating but this is due to propriception issues in my brain and not due to lesions in the spine.

IF it were me, I would  ever so gently work the McDonald criteria into the conversation and then show him the revisions.

I hope your visit to Vancouver is a good and productive visit and that you walk away with  a solid diagnosis and confidence in that diagnosis.

Ren

[supermum_ms]

Ok lets start with the " do you HAVE TO HAVE lesions on your spine to have a full dx for MS" question, let me see if i can make it clear once and for all - NO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Gee, i hope it came out clear enough?

Ok secondly, Um so you've got brain lesions and you've got black holes and you've got sx consistent with MS and the problem is what exactly, aint the neon sign flashing bright enough for the dr's over there in Vancouver?

I'm not sure what diagnostic criteria they are using but it isn't the international standard, see revised Mcdonald Criteria 2009 on our health pages, i do think there is a newly revised 2010-11 version. Note its been brain OR spinal lesions not & since the criteria was created!

Black holes are called T1 'hypointense lesions' they are strongly associated with MS, older demylated lesions, this plus other MS area lesions, then that in my humble opinion fits the criteria perfectly for time and space and if any did light up ontop of this, then its what i think you in the states call a 'slam dunk'.  

"Conclusion: The development of T1 hypointense lesions is strongly influenced by prior inflammatory disease activity, as indicated by enhancing lesions. These results suggest that treatment with once weekly IM IFNβ-1a (30 mcg) slows the 2-year accumulation of these lesions in the brain."

http://www.neurology.org/content/55/2/185.abstract

THis is the best resource for understanding lesion see below

http://www.scribd.com/doc/8817608/MRI-Atlas-of-MS-Lesions

My two cents is to find a different neuro!

Cheers.........JJ

[JaneK1975]

I believe it matters *where* in your brain, though. I am fairly sure that in any case, MRI alone does not guarantee a diagnosis. I think we'd all like the existence of the McDonald criteria to make diagnoses a black and white issue, but it's not that way.

Best wishes for your appointment, Candy. I know you've been through a lot. I'm really hoping that you get the best treatment possible.

- Jane

[kwarendorf]

I think they just want to see them in more than one Place. 2 lesions in different parts of your brain would count.

[maxthecat43]

I think it helps to make it more certain- but I don't think it's required.

[saucygrl]

I was diagnosed with an MRI only of my brain in October 2011.  Once I saw the neurologist he wanted an MRI of both.  I do have one lesion on my spine.  Not sure if that helps or not.

Chris

[candy158]

I forgot to say that I have lots of lesions on my brain, and a black hole too, so, if that helps...:)