Possible MS ?

[vanhawk48]

Hi ,  I ' m  a   female , just  turned  50 years  this past May . Until   October  of  last  year  , I have been  fairly  healthy .  Active ,  energetic  always  busy  and  on  the run .
One day  I had developed  terrible  vertigo . It  came  out  ot the blue . I  have  had  few  of  them in the past ,  one  was  briefly  diagnosed as  ear infection , second  and  third  I have  not  seek  any  medical  attention . All  of  them  within  last  14 years .
The last October  vertigo  was  extremely  dibilitating , first  few  days  I was even  concerned  to  sit  at  the chair , thinking  that  I  may  take  a   fall .
After  about  10 days , there  were some  improvement , but  my  PCP  ordered  brain  MRI .
The  results  are  as  quoted :

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 ." -

This is  when  MS  came  to  life  . Never  before  have  I  thought about it .
After  pulling  out  my  medical  record ,  I  have  noticed  the  complains  over  the years :
occasional  quesionable  fatigue , problem  walking , painful  hip , dizziness , depression , vertigo ,
tiredness , nausea  , muscles spasms  and  frequent  urination .
In  Nov  05 I have  had  what  they  called frozen  arm .
It  finaly  over , but it was  very painful experience .
In the  last  few  months  ,  I  have  had  more  medical  tests  , than  throughout  my  entire  life .
So  far  all  possible  mimics  have  been  excluded .
Negative  LP , normal visual evoked responses , normal brainstem auditory evoked responses and normal  somatosensory evoked responses .
Positive Romberg  and  significant  upbeating  positional  nystagmus .

Can  anyone  give  me  some  clue where to go  from here  ?
Is  this  only   a  wait  and   see  game ?
Thank you very  much  for  any  input .

[grannyhotwheels]

I was told that MS is diagnosed by process of elimination.  

What does your doctor tell you?  If you have auto-immune disease, then it could be anything.  Have you had a lyme test, or have they checked for a B12 deficiency?  

Find a good neurologist that specializes in auto-immune disease or MS.  It's usually a long journey to diagnosis.  Hang in there because sometimes they can decide very quickly what it is.  Either way stick with us and keep us informed of every thing that's going on.

I'm sure that quix or wanna will jump in sometime.  They know just about everything I think.

I'm sorry I'm not any help but I do have MS and I can be moral support if nothing else.

Best of Luck

Carol (OK)

[T-lynn]

Welcome,

You need to be seeing a neurologist that specializes in MS.

Not every test for MS is going to be abnormal,I see where you had a brain MRI which shows the possiblity of MS but has a C-spine and thoracic MRI been done?

MS is diagnosed on ruling out other disorders,which with you having the LP I'm sure many have been ruled out.

The road to a DX is a pain in the hiney.

What is your GP saying,how is he furthering your care?Has he referred you to a neuro?

[6-paq]

Welcome to the board.

Has your PCP referred you to a neuro?  I would think that with lesions

I agree with T-lynn, I have 2 brain lesions, but have a slew of "normal" tests and have eliminated many mimics as well.  

I'm still awaiting the results of a VEP and SSEP, but have been in the "wait and see" mode for some months.

I wish you the best and hope you find some answers soon!

[vanhawk48]

Thank you both of you for  your  answer .
Yes , I  do  have  MS  specialist  and  this is where the confusion starts .
The head  of  the team  claims it is probably  MS , but  his  associate  thinks  this isn't   MS.
Yes  MS  is  a disease  of  elimination , and  all  of  them  came  back  negative .
Lyme ( Western blot ) , Sarcoidosis , Neuro -Syphilis , Lupus  and  some  other  Vit B 12 is normal range .
Rheumatologist check me out and  said , there is no  slightest presence of  Arthritis .
Since  I  had  a  problem  walking , my  left  hip very  painful , they  run  some  X -ray , and  there are  no  indication of  any  abnormalities .
I don't  know  what  to  think .
Is this  possible  these are  just  age lesions ?
They  seem  to  be  quiet  big .
Thank you  all  for  your  input

[IUMOM]

Welcome! How long ago were some of your tests done? It could be that you need a repeat of  some of them. It seems as though some neuros have no trouble ordering repeat MRI's, but they rarely order second rounds of Evoked Potentials or LP's.

From what I've read, if you have lesions in the Corpus Callosum that is very suggestive of MS. If the two doctors aren't in agreement it might be time to get another opinion.

I hope you get things figured out soon.

[vanhawk48]

Thank  you  all  for  very  warm welcome .
I am  new  to  this  side , and  new  to the issue of  MS .
Yes  I did  have a  new  round of  MRI , this  past  May  which  says : " 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 ." -

What  to  think  about  Neuro  who  translate  reading  like  this   as  "  couple  insignificant  white  dots  " ?
I  have  a feeling  like  some  doctors  trying  very  hard  to minimize  the  seriousness of  these  brain  changes .
I  am  kind   of  dissapointed  with  this  kind  of  expert  opinion .
Please  help  me  out  to  sort  these  things  .
Thank  you  all  sincerely .

[Quixotic1]

Hi, I'm going to wade in here.  You've gotten some good advice and a lot of information.  Let me try to put it all into some sort of form and initial plan.  I'm the resident medical "expert" but am here because I am newly diagnosed with MS.  I was a pediatrician for 23 years and can offer some help navigating the medical maze, so to speak.  Welcome to the forum.  I hope we can be a great source of info and support while you consider such a life-altering possibility.

This MRI is very, very suggestive of MS, if not diagnostic. There isn't a neurologist on earth (except some really stupid, lazy or mean ones that we've met) who would dismiss that MRI in the face of recurrent neurological symptoms.   Wait!  Did a neuro do that???!!!!  Okay, if so you fire him (he is either rs, l or m) and make an appointment with a (another) neuro who specializes in MS.  

At 49-50 years of age we do begin to acquire white spots of uncertain significance - often referred to UBO's Unidentified Bright Objects.  Fine!  When these UBO's are found on MRI's done for someother reason (say head trauma) and there are no neurological complaints at all - maybe that many could be overlooked - Maybe.

In the face of recurrent complaints of vertigo, gait problems, recurrent fatigue over and beond tiredness (yes?), painful limbs, headache (doesn't stand alone, but is a neurologoc complaint), muscle spasms and urinary problems (again common, but gets included) you have to take it very seriously.  Add to that objective abnormalities on the physical exam of the + Romberg and nystagmus, you have to go some to say this isn't MS.  You actually have enough with what I mentioned to make a diagnosis of MS and to begin treatment.

The negative spinal tap and evoked potentials don't discredit the diagnosis at all!  A significant number will have these tests negative at time of diagnosis.  In the range of 25% to 60% for each of those tests depending on the age of the person and the duration of the illness.  

I don't see a report of the C-spine and the T-spine.  MRI's of those are necessary, with and without contrast, to establish the baseline.

You can go to your local chapter of the MS Society to find (or call them for) a list of MS specialists in your area.  These specialists generally have to be as good at identifying things that looks like MS as they are at diagnosing MS.  You've had the blood work to rule out mimics.  This should definitely include a "Western Blot" for Lyme disease sent to a Lyme-specializing lab for identification of indicative bands.  The ELISA sent by 99% of doc's is insufficient to rule out Lyme, as stated by the CDC (Centers for Disease Control).  The new neuro should have no problem doing this.  Here is the link to find you local chapter:

http://www.nationalmssociety.org/site/PageServer?pagename=HOM_FIND_homepage&JServSessionIdr011=09clw9blw2.app9b

The next thing you need to do is put all of your illness history, including the things you had dismissed, but recalled when you looked into MS, into a Timeline.  This is a brief chronological listing of the symptoms, when, how they appeared and how long they lasted.  Dr's impressions.  Tests done and the results.  Start out with a short paragraph talking about the person you are and were prior to all this (mainly the vertigo).  And what you've lost.

We are so serious about the usefulness of an illness timeline that we have several thread devoted to them.  A couple are actually almost tutorials.  They describe the usefulness of getting the information together in this way, the clarity and confidence it gives you and the way it changes the dynamic between you and a new physician.  The thread you want to read is "Timeline part 2 - Wanna"  (Wann is a member of the forum "Want to feel well!!!")

I would get right on this.  We cannot diagnose MS here, but we know when things are suggestive.  Data shows that promptly beginning Disease Altering Medication can statistically slow the progression of disability.  Our function here is to help find out if that is what is in your future and to find the answers to questions before, during and after the diagnosis - and get some new friends.

I hope this has been helpful.  If you have more questions ask away.  But, the answer to your main question:  "YES! That neuro is a dufus!"

Quix

[vanhawk48]

Extremely  grateful  for  your  inside .
Yes  , I  did  have  MRI's  of  the  whole spine , and  there  are  no  lesions .
Yes  without  being  to  specific , I  am  a  patient  of    Neuro  who  is   an associate  of  MS  Society  chapter .
My  extended  thank  you  for  your  input . About  15 years ago  I  had  very  abrupt unset  of  depression . It  was  a  time  that  for no specific  reason  I  have  felt  very  bad  physicaly  . I couldn't  keep  balance ,  I  was  very sensitive  to the outside  light  and  when  walking ,  I  had  a feeling  like  the  ground was  escaping   from  under  my  feet .
I was  affraid  to  go  to  the  doctor ,  for  I was  not  able  to describe  the real  issue  . English  is  my  second  language , I  was  born  in  northeren   Europe .
Since  than  , I have  had  many  different  episodes  which  only  now  , in  the  light  of  possible  MS  make  sense to me . Walking  straight  into a  walls , doors , sleeping  leg  in the  middle  of the  night  when  trying  to  go  to  the bathroom , sunburn  sensation  over  part  of  my  torso .
All  of  these  symptoms  are  documented  in  my  medical  record .
I am not  sure  if  my  MS  specialist  ever  read   all  my  file .

My  past  medical  record   is  very  indicative  of  neurological  issue .
Greatly  appreciate  your  advise .

[Quixotic1]

I, too, had a neurologist who dismissed me as a person imagining or faking her symptoms.  He is also listed on the MS Society's lsit.  The list is made up of Dr's who declared themselves to have a heavy load of MS patients.  I went across the city to another MS Clinic to get my diagnosis instantly by someone who could not hide his disdain for the objective things the first neuro "overlooked."  So, you need to find another.  The timeline will hlep.  Make sure you get, as is your absolute right, complete copies of all your medical records and test results.

We'll help in any way we can.  Quix

[vanhawk48]

I have  one  more  question  about  lesions . The  neuro  I have  seen  few  days  ago  told  me , that since  my  lesions  have  not  changed  since  October  , this  cannot  be  MS .
I  don't  know  if  I  should  believe  in  this , I  think  I have  read  some  place  on  the  web  that  this is  not  always  the  case .
Am  I  right ?

[Quixotic1]

I don't know for sure, but I do not believe this is true.  Old scars, which is what your images showed, may last for quite a while, more than years.  I am not 100% sure of this.  I believe that doctor was dismissing you and telling you anything to get you to leave.  

I'm sorry.  I misread your MRI Report to have more than 9 lesions.  It is only two.  I still believe they are significant.  My MRI of the brain has been unchanged for more than two years and I still received a definite diagnosis.

Quix

[vanhawk48]

According  with  my  first  MRI  , as  quoted  above  there were  1  lesion  about  10 mm , second  little  smaller  and  multiple  others ,   if  I  understand  this  correct .
The  second  brain  MRI  from  May  of  this  year , describes  one  9 mm  lesion  and  smaller
adjacent . Looks  like  there  were some  changes , since  on  the  second  MRI , there are no  more  multiple  additional  focal  areas of  abnormal increased signal intensity on FLAIR and T2 weighted  sequences  involving  the  periventricular  and subcortical white matter .
It  looks  to  me  like  you  are  absolutely  right . This  neuro  wanted  to  dismiss  me .
Thanks  Quix