Very upset , need some advise

[vanhawk48]

Hello to all , I  have  not  posted  anything  lately , but  I  can  assure  everyone  , that   I  was  reading   most  of  the  posts . I  didn't  feel  good  lately . Like  I said  in my  previous  posts , in  August  or  Sept. of  last  year  , I  have  developed  L'Hermitte  sign . At first  , it  wasn' t  strong . but  lately  it  started  bothering me  more and  more . So  finaly  I have  decided  to  call my  doctor  and  ask  if  I could  have  my  MRI  done  couple  of  months  early  than  previously  scheduled .  The  doctor's  office  did   the  job , and  I  had  my  MRI  on  Feb 12 th.
Before  the  MRI  , I have asked the technician  if  the  machine  is   3T  ? She  looked  little  surprised and  said  no it  is  1.5T .   My  response  was  , than  I  don't  want  to  go  for  it , since my  treatment  depends  on  new  lesions  showing in my  spine .
My  previous  studies  were  done with  3 T MRI , so  I  told  the  technician , that  I  would like  to  compaire  apples  to  appleas . She  seemed  to  understand  , and  said  she will go  to  check out  if  they have  3T  available  at  this  time . She  came  back  few minutes  later  and  said  its
ok , we  have  one  ( it  was in the hospital ).

My  3T MRI  from  May of  last year  
-" " There is no evidence of midline shift of mass effect .
There is focal abnormal increased signal intensity on FLAIR and T2 wighted sequences within the left frontla subcortical wite matter . This forcal abnormal increased signal intensity measures approximately 1 cm in maximum dimension and appears to have well - defined margins . There is an additional focus of abnormal signal intensity adjacent to this lesion and there are multiple additional focal areas of abnormal increased signal intensity on FLAIR and T2 weighted sequences involving the periventricular and subcortical white matter . The axial image ...on the T2 weithed sequences demonstrates focal increased signal intensity that appears to radiate laterally from the region of the corpus callosum , and these findings are suggestive of possible demyelinating disease ." -

Next  3 T  MRI
There is a 9 mm lesions on the  FLAIR  and  T2 weighted pulse sequences in the left frontal lobe between the frontal  horn of  the lateral  ventricle  and  the  Sylvian  fissure  which  shows  no  change  compared to the previous  study . There is an adjacent  smaller  lesion which extends  into  the  external  capsule .  This  lesion  is  also  unchanged  . There  ary  vey   subtle ill - defined  areas  of  FLAIR and  T2 hyperintensity  in  the  deep  white  matter  of  the  posterior  frontal - parietal  region  on   the  left  which  are  also  stable . Findings  are  suspicious  for  demyelinating  plaques  of  multiple  sclerosis  . There  are  no  new  plaques  compared  to   the  previous  study .  No  area  of  abnormal  enhancement . The  ventricles  are  normal . No  evidence  of  hydrocephalaus .
No space  occupying  lesions  or  extra - axial  frluid  collections . Brain  stem  and  internal  auditory  canals  are  normal . Mastoid  air  cells are  clear . Sinuses  are  clear . No  orbital  abnormalities . Pituitary  gland is  normal .  There are  no  parasellar  lesions . Cervicomedullary  jucntion  is  unremarkable . Visualized  upper  cervical  spinal  cord  in  normal ." -


The  preliminary  reading  of  my  recent  MRI  ( just  few days  ago )
Findings;  No acute infarct , intracranial hemorrhage , mass , abnormal extraaxial fluid collection or hydrocephalus .

Brain  parenchyma   demonstrates  a  nonspecific punctate  focus   of  FLAIR  hyperintensity in
the  left  frontal  white  matter  near  the  anterior  insular  region . This  is  nonspecific  and  not  typical  location  or  orientation  for  demyelinating  process .

Otherwise , incidental  note is  made  oof  left  frontal  developmental  venous anomaly .

No  abnormal  enhancement  or  restricted  diffusion .

Impression
1  Nonspecific  focus  of  FLAIR hyperintensity  within  the  left  frontal  matter . This is  not  a  typical  location  or orientation  for  a  demyelinating  process

Cervical  MRI

Trace  spondylosis  is  identified  at  C 5-6 and  C 6-7 . C 5-6 demonstrates a  very  small disk  bulge  that   ventrally  indents  the  thecal   sac  without  cord  contact .  No  foraminal  stenosis  . C 6-7 also demonstrates  very  small disk  bulge that  indents the  ventral  thecal  sac without  cord contact .   No  foraminal  stenosis .

No  MR   evidence  for  a  demyelinating  process within  the  cervical  cord .

It  looks  to  me  , like  my  MS  is  getting  better  , but  I  feel  worst .
I  called  the  hospital  and  asked  again  about  the  machine  the  MRI  was  done  with , and  I  was  told  it  was  1.5 T .
I am  loosing  it  , I  feel  cheated on , disrespected and  don't  know  what  to  do  next .
I  know  my  post  is  long  , but  please  stick  with  me  and  give  me  some  advise .
They called  from  my  neuro  and  told  me   that  my  MRI  don' t  show  anything  new , so  it is  a  good  news .
Thank  you
Vanda

[samsgam]

First off, I would write a letter of complaint about the tech that lied to you. That was very disrespectful and demeaning. I work in a hospital, and I do not think that techs offense to you should be taken lightly. Second of all, Does your neuro think it matters that it was a 1.5T verses a 3T? My symptoms started 5 mos ago and I am still waiting for somebody to give me an MRI for diagnosis, so I am curious to know...
Hang in there

[vanhawk48]

I  have  been  DX  in  September  of  last  year , but  I  am  not  on DMD .
I  was  in  agreement  with  my  Neuro  that if  we see  more lesions , than  we  may  start  treatment .
Since  I  have  developed  L'Hermitte  sign  , I was  kind  of  prepaire  for  cervical  lesion .  I don't  know  if  I  can  trust  the  less  accurate  MRI .

[Quixotic1]

Good to see you again!!  I'm glad this is where you come to vent.  You cannot depend on the 1.5T to show lesions in the spinal cord according to my neuro whom I repect as much as I have ever respected a colleague for what it's worth.  And, boy I'm sure people are tired of me saying it, but last year I had ZERO lesions in the spinal cord on a 1.5T and 6 weeks later had 6 (SIX) old lesions when we redidi it on a 3T.

I got mixed up.  Which of the above MRI's was a 1.5T when you thought it was a 3T?  And if the original one was done on a 3T, then you are right.  No thinking person would make any decisions based on a follow up done on a lower power machine.  It was wasted money, exposure to contrast and time.

As for starting therapy if more lesions are seen you are asking for trouble.  Many lesions still remain invisible and if you get lesions whcih actually have axonal damage (death of the nerve) the damage is irreversible.  The leading minds in the field say if you have a diagnosis, the most protective thing you can do is begin meds.  They're not perfect, but there are our best defense against progression of the disease.  It's not something that you can assess by reading your body.  T-Lynn will attest to that!

What are your thoughts?

Quix



Quix

[vanhawk48]

Dear Quix
Thank you for your  response . I  don't  know  if  you  remember  my  previous  threads  , but  I  have  to  addmit  , your  opinion  and  opinion  of  other  people of the blog  makes  big  difference . I have  made up  my  mind  ,  and I intend  to  be  proactive  in  my  treatment .For  some  unknown  reason  , my  Neuro  and  his  assistance  insist  on  not  taking  DMD. I  have  no  idea  why , is  this  their  philosophy ? . My  Neuro  told  last  time , that he  himself  is  involved  with  some  new  medecine  , coming  on  the  market  fairly  soon  ,  and  he  would  like  me  to   take it  , but  not  DMD.  I  don't  know what  to  think .
I  am  little  concern  , because  of  my  L'Hermitte  sign , pain  in  my  legs  and  tingling  of  my  both  feet  and  hands , my  tongue and  my  face  . I  don't  know  what  to  say , and  what  to  do  next .
I  am  in  the  process of  booking  up  my  summer  vacation   and  I  am  scare  to  death . I  am  going  to  see  my  mom  in  Europe , first  time  since  my  Dx .
It  is  going  to  be  some  emotions  involved , but  if  I  continue  to  feel  like  I  do  now ,  I  dont'  know  if   it's  ok  to  travel  .
Please  advise  me
Sincerely
Vanda

[Quixotic1]

Vanda, I certainly remember you, but not your details.  But, I looked up your old posts from July 2007.  I thought that your MRI then was just about diagnostic for MS, with at least one very large lesion.  So your neuro wants you to wait on a med, but is vague about when it will be available?.  Hmm..  "how" is your neuro involved with this med?  Did he participate in doing some of the studies?  Does he have a financial stake in the success of the med?

Would he tell you the name of the med?  If so there will be info online about it, the purpose of the studies, inital findings etc.  We can all read about it and see what promise it may hold.  My problem is withholding treatment possibly pending its arrival.  Can you call his offic and find out what the drug is being called while it is in studies?  It often will go by some letters and numbers or a word chemical word.  If he won't reveal what his relationship is to it or it's name, run like h*ll.

How soon is "fairly soon?"  If it is 6 months from now (which is fairly soon in the 6 to 10 year life of developing a new drug and getting it approved) then he has robbed you of more than a year of stabilizing your disease.

And this is the same doc who characterized a 9mm lesion as an "insignificant white dot?"  !!

I think you are in dangerous hands.   In January you said he (the neurologist) told you it can't be MS because there had been no change in the MRI in 8 or 9 months.  Mine, as I told you last month, has been stable for almost three years, yet I have confirmed MS.  

Vanda, be proactive and seek out another MS Specialist.  Drs volunteer to the MS Society that they are MS Specialists and likely volunteer to be Associates - whaterver that is.  This doctor is not doing you any good.  And now all this time has passed!  I am really worried for you. It is obvious that you have MS, you actually have that diagnosis, but your doctors want to wait on a new drug???  I don't trust this doctor's judgment.

Get all of your medical records.  You really need to verify that the MRI was done on a weaker machine.  The MRI report will usually have the MRI machine model number on it and we can check to see what the strength of the machine was.

I can see while you are confused and angry and scared.  We'll be here to help you!

Quix

[vanhawk48]

Thank  you  Quix
This  last  MRI , I  have  done  in  a  local  hospital . The preliminary  report  doesn't  specify  what  type of  machine  was  used .
I  have  just check  the  previous  two  report  , and  they  show  3 T  MRI .
Yes  , when  I  saw  the  results  of  my  newest  MRI , I  knew  right  away  something  was  not  right  . It was  good  not  to  see  anything  new , despite  my  L'Hermitte , but  my  old  large lesions  shrunk .
I just  decided to  call the  hospital  and  conformed  that  my  MRI  was  done  with  3T .  So  I  did , and  the  technician  told  me  after  checking  with  the  record  that it  was  done  with T 1.5 .
I  will  call  again  on Monday  . My  husband  is very  upset  , and  he  also  wants  me to  find  another  Neuro .
It  won't  be  very  long . Yes  , I  do  have  Dx  since  Sept. 07.
Thank you again  Quix

[Heather3418]

May I add my two cents...for what it's worth.  

When I first presented with symptoms of MS iin 1994, I had all my MRI's on 1.5T.  It showed 5 lesions in the brain and one in th spinal cord...CLEARLY.  Was there some lesions that may have been there, but missed.  You bet.  

I know that there are many of you that only have the 1.5T scanner available in your area.  Does this mean that if you have lesions, they won't show up?  NO.  But as Quix says, the 3T is more apt to pick up the lesions not seen on  1.5T.  The 7T that is coming out, will not doubt pick up even more.  As Quix says, we can have lesions that are so small they cannot be picked up at all.  

I hate to compare it this way, but nevertheless, this is the way I feel, if you see one roach, you can bet that there is even more.  This is the same way I feel about MRI's.  You can see some lesions, but it's my bet that there are more there that are too small to be picked up by the scanner.  So if one large lesion is seen and even in the absence of any current symptoms, this IS a reason to be on the one of the disease modifying drugs, if MS is the suspect.  As I have said till I am blue in the face, if these Neuro's had their family members sitting in front of them, would they withhold the DMD's to them and take a wait and see approach, KNOWING that MS is always active, whether we are symptoms are or not...?  I highly doubt it.

The DMD's are the only thing we have to try and slow down this MS Monster.  If anything can be gained by being on one of these drugs, then so be it.  It's much better than sitting back waiting for the "fire" to start where someone can see it flaming out the windows...the heck with the smoldering ashes...treat that puppy and NOW.  If your current Neuro won't prescribe them, find someone who will.  Even if it means that you have to travel clear across the country to find an Neurologist that specializes in NOTHING but MS patients.  It's worth it....trust me on this one.

So sweetheart, if you already have a diagnosis, GET ON a DMD NOW, before any further damage is permanent....it's all we have.  It's our best shot (excuse the pun)

Heather

[vanhawk48]

Yes  Heather ,  your  two  cents  are  very important .  Looks  , like  I  am having  problem  with  thinking . I  will  definitely  look  for  someone  who  is familiar  with  MS .
The  current  one  and  his  associate  are  both   MS  Neuros . I  don't  understand  any  of  this .  
Thank  you  for  your  inside . It  is  always  highly  valued .
Vanda