MRI findings...

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Sandy C.
Regular Member


Date Joined Feb 2006
Total Posts : 129
   Posted 2/24/2007 6:52 PM (GMT -6)   
sad  I have the written results to my most current MRI findings, but yet I can not translate this into English other then bad Bad BAD. I was hoping that someone here may be able to translate these findings for me??? I see my neuro in less then a month, and I have a feeling she will agree with me that these findings aren't good, but won't translate it to English...
 
FINDINGS:
 
Far greater then 10 T2 hyperintense supratentorial lesions are again identified involving the periventricular and subcortical white matter. The current dominant lesion is located within the left periventricular white matter measuring approx. 17mm maximally. In comparison with 10/06/2005, significant disease progression has occurred. The following lesions are either new or significantly larger: subcortical white matter left superior frontal gyrus, subcortical white matter posterior aspect left superior frontal gyrus, right posterior frontal periventricular white matter, multiple lesions within the left frontal periventricular white matter, left posterior frontal white matter, left parietal deep white matter, spleen, corpus collosum, left parietal deep and pariventricular white matter, right parietal white matter, left posterior temporal subcortical white matter, and anterior left temporal periventricular white matter.
 
Within the infratentorial brain, scattered small foci of T2 prolongation persists within the middle cerebellar peduncles and the left cerebeller hemisphere. They have nto progressed significantly.
 
The current dominant lesion located within the left parietal, periventicular, and deep white matter demostrates a complete rim of peripheral intense enhancement with smaller amount of internal heterogenous enhancement.
 
No evidence of brain parenchymal volume loss.
 
IMPRESSION:
 
1. Far greater then ten T2 hyperintense white matter lesions involving supratentorial much greater than infratentorial brain consistent with demylenating disease. In comaprison with 10/06/2005, significant disease progression has occurred as described with numerous new or more conspicuous lesions.
 
2. Dominant left periatrial lesion demonstrats complete rim of intense peripheral enhancement.
 
3. No parenchymal brain loss.
 
 
PHEW. Got that all written down. Clinically, I still walk without aide and I work part time. I just finished my BSN with a almost a 4.0 GPA. I can also tell you that it seems like almost everyday I am adjusting to something 'new' with my body. I can say that these results aren't a surprise, but it is still very hard to see on paper what others would simply write off as 'all in my head.'
 
The dominant lesion I have come to call "Iggy" because on dx it was thought to possible be a parasitic worm and the IgG lab came back negative. It was also 10mm on dx, in 2005 it grew to 12mm and on this current MRI from 2006, it is now 17mm. OUCH. All I can say is it needs to stop growing so fast...
 
Although the findings only report far greater then 10 lesions, when I was diagnosed at another facility it was written 'far greater then 30 lesions.' So I know I have a lot in there. With significant disease progression as seen on MRI, is it possible that I have a more progressive form of MS?  Since dx it has felt as if my MS is slowly progressing, slowly with few if any relapses. With all these areas of my brain having activity...
 
Right now, I am having more good days then bad. I am currently not taking any meds because my liver enzymes are elevated and it seems as if I function much better 'all natural.' I am being reviewed at work for a promotion and I am viewed as an asset by my patients and coworkers at work. I can make it through most days now without a nap and my memory is the best that it has been in over a year. Right NOW I feel good, but reading this MRI is emotionally painful. And another funny thing, I almost hate to verbalize, is that although I feel very good right now, I am noticing things about my body that make me think I am heading to another 'relapse' to the point I can't work... or maybe it's just another new lesions...hmm
 
Any feedback would be much appreciated. Even a good website that can help me to translate these findings myself. I just want to know why I feel like I feel, if that makes sense.
Sandy C.
Diagnosed with Multiple Sclerosis September 2003 currently taking Rebif, Cymbalta 60mg PO QD, and Provigil 200mg PO BID.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 2/24/2007 7:02 PM (GMT -6)   

I'm sorry that you now have evidence that your MS is clearly progressing.  We all know that MS continues to wreak havoc with the myelin -- forming lesions -- even without external signs, but in your situation, you've got the external problems to support the progression evident on the MRI.

I'm sorry you're having liver enzyme problems.  Have you considered Copaxone?  It's not an interferon, so the liver issue shouldn't be as great.

I can't (and won't -- I'm not a doctor, nor medical professional!) specifically interpret your MRI, except to say it's pretty clear even to a layperson like me that your MS is progressing, new lesions are occuring in all sorts of places, and your body is being affected in lots of ways.  I hope your doctor will spend sufficient time with you to answer your questions fully and completely, and find a treatment that will be helpful for you.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Sandy C.
Regular Member


Date Joined Feb 2006
Total Posts : 129
   Posted 2/24/2007 7:14 PM (GMT -6)   
Thank You uppity for your response.
I was on copaxone for the year between 10/06/2005 and when this MRI was taken. I don't feel that it was effective for my MS and I actually stopped taking it the day this MRI was taken. I had an assessment the same day and say how poorly I perform on tests that the previous two years I did very well in... (I am in a gene research study for the past three years).

My doc is always good about answering my questions. I guess it is just hard for me to ask her if I have a more progressive form of MS. I just like to think that if it was, she would tell me... But I also know that she likes to tell me about things that she can treat and not things that she can't treat. I have seen her get fustrated and irritable when she says there is not much that can be done about something that is going on with me. These are usually for things I state "I just wanted you to be aware" and I am not asking for anything.

I am thinking I should see my other neuro at UCSF where this study is being conducted out of. He is a more aggressive medical side neuro with little compassion. Maybe that is what I need right now.
Sandy C.
Diagnosed with Multiple Sclerosis September 2003 currently taking Rebif, Cymbalta 60mg PO QD, and Provigil 200mg PO BID.


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 2/24/2007 8:21 PM (GMT -6)   
Hi Sandy,
 
    I'm not good at interpreting those MRI's either but it does seem that you have a lot of new activity going on.  Progressive MS is usually determined by clinical presentation instead of the MRI's, the number of lesions doesn't matter.  Whether you are in the SPMS phase should be something to ask your doctor about, but really the treatment remains the same.  Since Copaxone didn't work for you and the interferons seem to cause problems with your liver, have you considered one of the other treatments available?  Novatrone or tysabri might be a better choice for you. 
 
   I am glad to hear you are feeling well!  That's wonderful!  If you feel a more aggressive doctor would be better for you, then go for it.  I hope you find some way to slow this down.  Best wishes!
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3531
   Posted 2/24/2007 8:29 PM (GMT -6)   
Wow, Sandy,
 
That is very scary.  Hang in there.  The good news is you are doing so well (job, educations, general functions).  Be tough!!!!!  I have read that the number of lesions doesn't always coincide with the level of disability.  You could have a lot of lesions and still be okay.  That sounds like you!!!  Don't let a piece of paper dictate how you feel about your life.  You are doing so well. 
 
It can't hurt to see the other more aggressive Dr.  Find your compassion elsewhere (perhaps here?!) and see if this guy has some answers and reasonable treatment options for you.  Good luck and keep us posted.
Gretchen
 
diagnosed: MS  July 2006
Treatment: copaxone, prayer, laughter, and positive thinking


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 2/24/2007 8:51 PM (GMT -6)   
Hey Sandy

Whew! I'm sorry, i know u'r scared and this is overwhelming, but as the others said, seems u'r doing well physically and mentally as well...and as Gretchen said, the number of lesions doesn't always coincide with the condition of u'r body outwardly. U know MS progresses continually and u may not feel or see any changes for a long time. I think it'd be a great idea to consult with the other neuro on this report, but be sure to get copies of the film so he can review those as well. I know, as u said, he may not be the most compassionate, but if he's more aggressive and maybe willing to give u help answers to the things u'r other neuro won't, then u need to be talking to him. Hang in there and don't let this get u down. I know it's unsettling to say the least, but as u said, the progression isn't stopping u and i hope u won't let it. U'r a go getter for sure....nearly a 4.0 GPA!!!...so u just keep being u'rself and make the most of every day. Take good care Sandy and let us know what the doc's tell u.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


Sandy C.
Regular Member


Date Joined Feb 2006
Total Posts : 129
   Posted 2/24/2007 9:08 PM (GMT -6)   
Thank you ALL for the encouragement! I may be a nurse, and I may be able to to "know" things, but when my name is on that paper, I loose any "know" I may have and just get overwhelmed. I think this is what makes me a good nurse. I can empathize with my patients in ways that many cannot. I should have been a psychiatrist or psychologist lol. Maybe its not too late for that....hmmm
Sandy C.
Diagnosed with Multiple Sclerosis September 2003 currently taking Rebif, Cymbalta 60mg PO QD, and Provigil 200mg PO BID.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 2/25/2007 5:44 AM (GMT -6)   
Sandy C. said...
Thank You uppity for your response.
I was on copaxone for the year between 10/06/2005 and when this MRI was taken. I don't feel that it was effective for my MS and I actually stopped taking it the day this MRI was taken. I had an assessment the same day and say how poorly I perform on tests that the previous two years I did very well in... (I am in a gene research study for the past three years).

My doc is always good about answering my questions. I guess it is just hard for me to ask her if I have a more progressive form of MS. I just like to think that if it was, she would tell me... But I also know that she likes to tell me about things that she can treat and not things that she can't treat. I have seen her get fustrated and irritable when she says there is not much that can be done about something that is going on with me. These are usually for things I state "I just wanted you to be aware" and I am not asking for anything.

I am thinking I should see my other neuro at UCSF where this study is being conducted out of. He is a more aggressive medical side neuro with little compassion. Maybe that is what I need right now.

I guess I don't know what it is you are expecting of your doctor.  There isn't any way for her to know just yet whether you have a "more progressive form of MS" or not.  You're working, moving around, not sufficiently disabled that you can't perform the "Activities of Daily Living" that doctors look for.  And there is "not much that can be done about some..." of the things going on with you.
 
I don't think any of us know for certain that any of the drugs now being prescribed for MS are "working" or "not working".  None of them promise to stop the progression entirely, of course...only to slow it down.  I've been on Betaseron for a lot of years..I don't know that it's working, and although I haven't had any done in years, I suspect a new MRI would show at least some progression..
 
but I don't know how worse I might be had I not taken it at all.
 
As the others have already said, it's not the number of lesions, or even necessarily their location, that is the issue -- it's how they're affecting your ability to function.  And by your account, you're functioning reasonably well.  You have a chronic illness that, to date, is not cureable, and is progressive, so it seems reasonable that you're not as well off now as you were 2 years ago, or before diagnosis.  You may have to think about adjustments to your career - -it's better to think about them now, before you have to do something, than in the middle of a crisis.  And try not to expect miracles from your doctor.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Sandy C.
Regular Member


Date Joined Feb 2006
Total Posts : 129
   Posted 2/26/2007 6:34 AM (GMT -6)   
Uppity-
In my original post there was no mention of a doctor, I am seeking knowledge. Knowledge that is a bit over my head at this point in time, so no I can't expect any doctor to go into the detail I would like. I am very grounded and well informed about MS as well. I just wonder how the paper with my name reads and a few papers without my name on it reads, then look at the clinical presentation of each case.

My doc at UCSF is in the "know" for all the lastest research and I have to wonder if there is something else out there...
Sandy C.
Diagnosed with Multiple Sclerosis September 2003 currently taking Rebif, Cymbalta 60mg PO QD, and Provigil 200mg PO BID.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 2/26/2007 9:43 AM (GMT -6)   
Sandy C. said...
Uppity-
In my original post there was no mention of a doctor, I am seeking knowledge. Knowledge that is a bit over my head at this point in time, so no I can't expect any doctor to go into the detail I would like. I am very grounded and well informed about MS as well. I just wonder how the paper with my name reads and a few papers without my name on it reads, then look at the clinical presentation of each case.

My doc at UCSF is in the "know" for all the lastest research and I have to wonder if there is something else out there...

Actually in your original post that started this thread there is mention of your doctor, and you talk about her in a follow-up post in this thread. Anyway..I'm not trying to be argumentative; just trying to tell you what you already know intellectually, but maybe are trying to deny emotionally. I'm really sorry any of us have to deal with this stuff.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, September 22, 2017 8:21 PM (GMT -6)
There are a total of 2,871,988 posts in 315,161 threads.
View Active Threads


Who's Online
This forum has 156654 registered members. Please welcome our newest member, lelapam.
377 Guest(s), 6 Registered Member(s) are currently online.  Details
Rupee, PeteZa, breakthecycle, Ron42661, Fletch10, RiddleMeThis


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer