positive MRI and Negative LP

[santana8]

First MRI positive white matter lesions.  Five more MRI's every six months over the

last two years show no new lesions , no change. LP one year ago negative.    Is the

negative LP and nothing new showing on MRI in two years an indicator that this may

have been ADEM rather than MS?  Do most MS patients have a positive LP?

Should something new have shown up in two years time?  Does anyone have any

knowledge of a person being stuck between these two dx's for this long? Neuro said

that he would have expected to see something new on MRI in this amount of time, but

that it still may end up being MS. But for now my dx is ADEM.

[young at heart]

PLEASE SEE ANOTHER NEURO, MY FIRST MS ATTACK WAS BROUGHT OUT BY A BACK SURGERY.SO A MEDICINE CHANGE COULD OF PERCIPITATED  AN ATTACK,THIS IS WHY ANOTHER OPINION IS BENIFICIAL.

WITH MULTIPLE LESIONS AND ON,THIS WOULD MEET THE CRITERIA FOR A MS DIAGNOSIS.

MANY WITH MS HAVE UNCHANGED MRI'S IN 2 YEARS OR SO.THIS COULD BE THAT ITS STABLE AND REMITTED.

FURTHER TESTING NEEDS DONE,JUST FOR YOUR SAKE AND HEALTH.

T

[santana8]

SORRY I FORGOT TO ANSWER YOUR QUESTION ABOUT THE LESIONS. NEURO SAYS THEY ARE NOT GONE. THEY ARE THE EXACT SAME LESIONS THAT WERE ON THE FIRST MRI. NO NEW ONES AT ALL. NO ENHANCING ONES. HE STATES THAT THEY ARE THE SAME AGE AND HE BELEIEVES THEY ALL HAPPENED AT ONE TIME. SINCE I HAD NEVER HAD AN MRI BEFORE THIS EVENT THERE IS NO WAY TO KNOW WHEN IT OCCURED. WHETHER THEY DEVELOPED FROM THIS ATTACK OR IF THEY MAY HAVE BEEN THERE SINCE I HAD OPEN HEART SURGERY AT 18 MONTHS OLD. THE BREATHING MACHINE I WAS ON FOR 24 HOURS MAY BE RESPONSIBLE FOR THE LESIONS. THEY HAVE PROOVED THAT THESE MACHINES CAN CAUSE THIS TYPE OF DAMAGE. BUT HE CAN'T EXPLAIN THE ATTACK IN 2006 THAT CAUSED ALL OF THESE SYMTOMS .

[santana8]

I HAD BEEN ON ZOLOFT FOR 14 YEARS WHICH WORKED WELL. I HAD NOT HAD

ANY DEPRESSION FOR 10 YEARS. THE FIRST TWO DEPRESSION EPISODES I

HAD WERE IMMEDIATLEY AFTER THE BIRTH OF MY FIRST TWO SONS. FINALLY

THEY REALIZED NOT TO TAKE ME OFF THE ZOLOFT DURING THE THIRD PREGNANCY.

AFTER MY THIRD SON WAS BORN NO DEPRESSION,BECAUSE THEY LEFT ME ON

MY MEDS. HE IS NOW 12 AND UNTIL APRIL 2006 MY DEPRESSION WAS UNDER

CONTROL. MY PCP PERCRIBED ME A LOW DOSE OF XANAX ,25MG ONCE AT

BEDTIME. THIS WORKED PERFECTLY WITH THE 100MG ZOLOFT. BEST I HAD FELT

IN 10 YEARS. BUT THEY MADE ME GO TO A PHYCIATRIC CLINIC TO GET THE

XANAX BECAUSE IT IS A CONTROLLED SUBSTANCE. THIS NEW DOCTOR AT THIS  

CLINIC DIDN'T WANT ME ON THE XANAX AND DECIDED THAT MY  ZOLOFT WASN'T

WORKING ANYMORE AND THAT PAROXETINE(GENERIC PAXIL WOULD CONTROL

BOTH THE DEPRESSION AND ANXIETY. I DISAGREED,BUT HE INSISTED THAT HE

KNEW WHAT HE WAS TALKING ABOUT. HE WAS THE DOCTOR AFTERALL. HE

JERKED ME OFF THE ZOLOFT AND THE XANAN WITHOUT A TAPER AND STARTED

ME ON THE PAROXETINE THE VERY NEXT DAY AT A PRETTY HIGH DOSE,30 MG.

SIX WEEKS INTO THE NEW MEDICATION IS WHEN THIS ATTACK HAPPENED.

WHEN I STARTED HAVING DISTORTED VISION AND TOLD THIS DOCTOR, HE SAID

THAT IT WAS UNHEARD OF SIX WEEKS INTO THE MEDICINE AND TRIED TO RAISE THE

DOSE TO 40 MG WHICH I NEVER GOT FILLED. I STOPPED THE PAROXETINE MYSELF WHICH WAS NOT GOOD, BUT I KNEW THAT THIS MEDICINE WAS THE

ONLY THING THAT HAD CHANGED. I ENDED UP IN THE ER COMPLAINING WITH

VISION DISTURBANCES AND CONFUSION.THEY TOUGHT I WAS CRAZY,

IGNORED THE VISION  AND FOCUSED ON THE  DEPRESSION AND ANXIETY. THEY

HAD ME TAKEN IN HANDCUFFS BY A POLICE OFFICER IN A POLICE CAR TO A

PHYCIATRIC HOSPITAL AND TRIED TO COMMIT ME. LUCKILY THE DOCTOR THERE

REALIZED AFTER TALKING TO ME THAT I WAS NOT CRAZY. HE SAID THAT MY

MEDICATION HAD BEEN MESSED UP. HE SAID HE WANTED ME IMMEDIATLEY

BACK ON THE ZOLOFT AND THE XANAX AND HE HAD TO RAISE THE DOSE TO GET

IT BACK IN CONTROL. BY THE FOURTH WEEK OF BEING BACK ON MY MEDS ALL

OF THE PHYCIATRIC SYMPTOMS WERE GONE. APITITE CAME BACK. EVERYTHING

GOT BETTER EXCEPT FOR MY VISION. NOW THAT MY NERVES WERE BACK

UNDER CONTROL I STARTED GOING TO EYE DOCTORS. I WENT THROUGH SIX OF

THEM. COMPLETELY NORMAL EXAM THEY SAID. CAN'T FIND ANYTHING WRONG

EXCEPT DRY EYE, BLEPHARITIS(INFLAMATION OF THE EYELIDS) BOTH OF WHICH

ARE SIDE EFFECTS OF PAROXETINE AND SO IS BLURRED VISION. I HAD 20/20

VISION THEY SAID SO WHY COULDN'T I SEE TO DRIVE.  I FINALLY ASKED THE

SIXTH ONE TO GIVE ME A VISUAL FIELD TEST. HE SAID I DIDN'T NEED ONE,BUT I

WAS OVER PEOPLE TELLING ME I COULD SEE WHEN I KNEW I COULDN'T, SO I

INSISTED. IT CAME BACK SHOWING A INFERIOR HARMONEOUS QUADRANT

DEFECT ON THE LEFT. THEN SIX MONTHS AFTER THIS HAPPENED THEY FINALLY

BELEIVED ME. THATS WHEN I WAS SENT TO A NEUROLOGIST. I FEEL THAT THE

MEDICINE OR THE WAY IN WHICH IT WAS SWITCHED AROUND SO CARELESSLY

HAD SOMETHING TO DO WITH WHAT HAPPENED. OH BY THE WAY NEUROPATHY

AND VISUAL FIELD DEFECT IS ALSO ON THE PAROXETINE SIDE EFFECT LIST. I

GUESS YOU CAN TELL THAT I AM ANGRY AND THAT I NO LONGER TRUST

DOCTORS WITHOUT CHECKING UP ON WHAT THEY ARE DOING. ANYWAY I DON'T

KNOW IF THIS WAS AN IMMUNE RESPONSE TRIGGEREDBY THE MEDICATION,

ADEM, OR MS. MY NEURO LET IT SLIP OUT AT MY LAST APPOINTMENT WHEN I

WAS TALKING ABOUT THE MEDICATION CHANGE THAT THIS IS WHAT STARTED

THIS WHOLE THING, BUT QUICKLY CHANGED HIS STATEMENT TO WELL IT MAY

  HAVE BEEN A CONTRIBUTING FACTOR. AS HE SAYS ITS NEVER BEEN

DOCUMENTED IN THE LITITURE WITH THESE DRUGS. SORRY THIS IS SO LONG,

BUT I CAN'T ASK FOR YOUR OPINION UNLESS I TELL YOU ALL THE FACTS OF

WHAT HAPPENED. THANKS FOR LISTENING

[Heather3418]

Boy you have a difficult case.  Some of your symptoms can definitely be related to MS, but I agree with the Neurologist...over this period of time, I would have expected more lesions.  Are you saying that the original lesions they saw in the first MRI are now all gone?

As you are probably aware, alot of your symptoms are related to your anxiety and are not symptoms of MS.  I hope that you are getting treatment for your anxiety, so the true symptoms of MS shine through and are not clouded by symptoms caused by the anixety.  You and your Neuro want the clearest picture possible, to see if a diagnosis of MS can be established.

Your should definitely have a spinal MRI of the FULL spine, top to bottom, with and without contrast dye.  Not all symptoms from MS come from the brain.  Also, the strength of the MRI machine is vitally important.  Can you find out if you are scanned on an MRI that is at least at 3T?  Ones that are usually used are 1.5T.  Many lesions cannot be seen on the 1.5 scanner as our resident retired doctor, Quix can attest to.  

I hope the best for you and certainly hope that the doctor can get to the bottom of all of this.  Get that anxiety under control and hopefully many of the problematic symptoms you are having will disappear and at least give you some relief.  I've had anxiety in the past and finally got control over it about 20 years ago.  It made a world of difference in the way I felt and in curing some of the symptoms I suffered from.

Heather  

[santana8]

Thanks for the info on the different scans. I was thinking about maybe seeing an MS specialist, but I am kind of afraid that since that is his speciality and since I do have lesions in the white matter that he may dx me with MS without knowing for sure. Does that make any sense? The first neuro I saw had MS pamplets and everything in his waiting room shouted out MS. He  diagnosed me with MS based only on the MRI and VEP. I would have never known that ADEM was a possibility had I not gone to the second neuro.  THE second neuro said that there was something quirky with me, because I wasn't fitting the MS diagnoses  enough to  convince him of the diagnosis. The first neuro said I had had it for a long time considering  the large number of lesions, but before that day that I had that attack  I don't recall any neuro symtoms. And if I had had it a long time would't I have seen something to produce that many lesions? And then there is the fact that the second neuro said that all my lesions look the same age. indicating that they happened at the same time, which goes along with my history of no prior symtoms. He also stated that the open heart surgery that I had at 18 months to correct a birth defect,which resulted in me being put on  a machine that breathed for me during the surgery and they had to stop my heart to do the surgery could have put these lesions on my brain . He says there are studies that proove that these machines especially  in 1968 when my surgery was done can cause white matter lesions. But he had to explain what caused the neuro dysfunction in 2006. Maybe these lesions have been on my brain all of these years and the medication switch and the inncorect way that it was done caused these symptoms. paxil has neuropathy and optic neuritis on its possible side effects list.I really don't   know what to do from here. How do I find out    for sure?

[young at heart]

WITH THE WHITE MATTER AND ABNORMAL VEP,PLEASE SEE ANOTHER NEURO,JUST FOR THE SAFE SIDE OF THINGS.

A C-SPINE(CERVICAL) AND THORACIC(MIDDLE OF BACK) ARE MRI'S ,THESE AREAS CAN CONTAIN LESIONS ASSOCIATED WITH MS.

YOU DEFINATELY HAVE A LIST OF SYMPTOMS,WHICH SOME ARE OF MS ORIGIN.

THANKS FOR THE INFORMATION ON ADEM.

T

[santana8]

I FORGOT TO TELL YOU WHAT ADEM IS. IT STANDS FOR ACCUTE DESSIMINATED ENCEPHALOMYELITIS (inflamation of the brain and or spinal cord ). It is an accute illnes that strongley resembles ms, both clinically and on MRI. THE ONLY DIFFERENCE IS IT IS FOUND IN CHILDREN MORE COMMENLY THAN ADULTS AND IT USUALLY HAS A MONOPHASIC (one time) COURSE. MEANING ONCE IT IS OVER THERE IS USUALLY NO MORE ATTACKS. THE PATIENT IS USUALLY LEFT WITH SOME DEFICITS FROM THE NERVE DAMAGE. IT IS USUALLY FOLLOWED BY A VIRUS, INFECTION OR IMMUNIZATION OR SPONTANEOUSLY. I HAD A MEDICATION SWITCH SIX WEEKS PRIOR TO THE ONSET OF SYMPTOMS, BUT NEURO DOESN'T KNOW IF THIS COULD HAVE TRIGGERED THE IMMUNE RESPONSE,SINCE IT HAS NEVER BEEN DOCUMENTED WITH THESE MEDICATIONS IN THE LITERATURE BEFORE.THE MEDS WERE SSRI'S.

[santana8]

I HAVE NOT HAD A C-SPINE MRI OR A THORACIC (DON'T REALLY KNOW WHAT THEY ARE. ALL SIX MRI'S HAVE BEEN OF THE BRAIN. ONE OF THEM INCLUDED THE BRAIN STEM AS I HAVE HAD STIFF NECK AS ONE OF MY SYMPTOMS. IT SHOWED SOME MILD ARTHRITIS DENGENERATIVE IN THE BACK OF MY NECK WHERE THE PAIN AND STIFFNESS IS. I DID HAVE A VEP SIX MONTHS AFTER ONSET WHICH WAS POSSITIVE IN ONE EYE.  I HAD A VISUAL FIELD TEST THAT SHOWED A LEFT INFERIOR HARMONEOUS QUADRANT DEFECT. HERE IS A LIST OF MY SYMPTOMS IN THE ORDER THEY OCCURED OVER THE PAST TWO YEARS.

DISTORTED VISION
EXTREME PHOTOPHOBIA
SEVIER MENTAL STATUS CHANGES
SEVIER DEPRESSION
SEVIER ANXIETY
HYPER STATE
BACK PAIN
SHOOTING THIGH PAIN
HEADACHE
CHILLS
VOMITING
DIAREAH
ANOREXIA
RAPID WIEGHT LOSS( 40lb in first three weeks )
DYSLEXIA (left-right,up-down confusion )
CONFUSION
NUMB EYES, FOREHEAD,SCALP
FACIAL TWITCHES ( especially around the eyes)
BLURRED VISION
DIMMED BISION( no color)
VIRTIGO
STIFF NECK
PAIN DEEP IN EYES
PRESSURE IN EYES, FACE AND SIDES OF HEAD
BLEPHARITIS ( inflamation of eyelids)
DRY EYE SYNDROME
TRANSIENT TINGLEING(sides of forearms, and back calves )
IMPROVEMENT OF ALL SYMPTOMS AT THE SAME PACE OVER THE PAST TWO YEARS. NEURO SAYS I DON'T HAVE ANY PEREPHRIAL DAMAGE.

[young at heart]

WELCOME TO OUR CYBER FAMILY,

I DON'T KNOW ANYTHING ABOUT AN ADEM.

HAVE YOU SEEN AN MS SPECIALIST? HAVE THEY DONE A C-SPINE MRI OR A THORACIC?

HOW ABOUT EVOKED POTENTIALS?

A LP IS NOT POSITIVE IN ALL MSERS.MINE ONLY SHOWS HIGHLY ELEVATED MYELIN BASIC PROTEINS.

WHAT OTHER SYMPTOMS DO YOU EXPERIENCE?

MAYBE A 3RD OPINION IS IN ORDER,IS ONE IS SAYING MS AND ANOTHER ADEM.

SOMETIMES WE NEED THAT EXTRA OPINION WHEN NEURO'S HAVE US CONFUSED WITH CONFLICTING DIAGNOSIS'S.

DON'T KNOW IF ANY OF THIS HAS HELPED OR NOT.

T-LYNN