Aa
Do most MS PATIENTS HAVE A POSITIVE LP?
I READ THAT ABOUT 98% OF PATIENTS WITH MS HAVE OBLON BANDING. IS THIS CORRECT? DOES A NEGATIVE LP MEAN YOU HAVE LESS OF A CHANCE OF HAVING MS IF MRI IS POSITIVE?
Out of curiosity, what else can cause O-Bands to be present in CFS? Do you happen to know?
Christine
(un-dx)
Christine
(un-dx)
Okay, I just read this whole thread and all I can say is you appear to have an outstanding and caring neurologist!!! The decrease in your level of consciousness and other symptoms really does suggest ADEM. I have tried to read up on it over the last few months and do not have a great grasp on it.
What I remember is that, in an adult (an sometimes in kids) it can be recurrent. When it is recurrent multiple times it is then sometimes diagnosed as MS. I also read that generally the CSF is negative for Oligoclonal banding.
About the CSF being 95% to 100% positive in MS. I think a couple things are being misunderstood by neurologists here, but I can't be sure. By the old standard method of checking for O-Bands, the %age of people with MS was more like 75% to 80%. People in the first few years of their disease are the most likely to be negative.
About 2 years ago they determined that a specific test called "Isoelectric Focusing using either Blotting or Fixation" Using this technique in a research setting with strict control over the analysis of the immunoglobulin in the CSF yielded almost 100% detection of O-Bands in people with MS, and picked up almost no false positives.
THE PROBLEM: In my experience all labs do NOT switch over to new techniques automatically. Unless the doctors insist on the new techniques, the old and less accurate ones continue to be used. So if a doctor merely scim read this new info and missed the point that they had to verify that the lab they employ does use the new technique and are trained in interpreting it, then they may be wrongly saying people do not have MS.
I really worry that many of the labs that are running our LP tests are have not upgraded to the new (as of 2005) test.
Also, the testing was done on people with confirmed MS. I have not yet read the study using it for initial diagnosis. Because the number of O-Bands is felt to be something acquired during the course of the disease, The earlier one is in their MS course, the fewer O-Bands they will likely have.
I have confirmed MS. But my CSF was negative (only one O-Band). My MS neuro is so anal-retentive about things being done right that I am sure he employs a lab that uses the new test. At the time of diagnosis, I had only been having symptoms for 2+ years.
So, to answer your question. Yes, most MS patients do have O-bands. And if the lab is using the new technique for identifying them, and is trained at interpreting them, then the percentage would be very high. But, I doubt that this is universally the case. Those of us with negative LPs should call the supervisor of the lab that ran our tests and see it they use IsoElectric Focusing with the regular blotting or fixation.
This is new information on O-Bands. I have never posted this before.
Quix
What I remember is that, in an adult (an sometimes in kids) it can be recurrent. When it is recurrent multiple times it is then sometimes diagnosed as MS. I also read that generally the CSF is negative for Oligoclonal banding.
About the CSF being 95% to 100% positive in MS. I think a couple things are being misunderstood by neurologists here, but I can't be sure. By the old standard method of checking for O-Bands, the %age of people with MS was more like 75% to 80%. People in the first few years of their disease are the most likely to be negative.
About 2 years ago they determined that a specific test called "Isoelectric Focusing using either Blotting or Fixation" Using this technique in a research setting with strict control over the analysis of the immunoglobulin in the CSF yielded almost 100% detection of O-Bands in people with MS, and picked up almost no false positives.
THE PROBLEM: In my experience all labs do NOT switch over to new techniques automatically. Unless the doctors insist on the new techniques, the old and less accurate ones continue to be used. So if a doctor merely scim read this new info and missed the point that they had to verify that the lab they employ does use the new technique and are trained in interpreting it, then they may be wrongly saying people do not have MS.
I really worry that many of the labs that are running our LP tests are have not upgraded to the new (as of 2005) test.
Also, the testing was done on people with confirmed MS. I have not yet read the study using it for initial diagnosis. Because the number of O-Bands is felt to be something acquired during the course of the disease, The earlier one is in their MS course, the fewer O-Bands they will likely have.
I have confirmed MS. But my CSF was negative (only one O-Band). My MS neuro is so anal-retentive about things being done right that I am sure he employs a lab that uses the new test. At the time of diagnosis, I had only been having symptoms for 2+ years.
So, to answer your question. Yes, most MS patients do have O-bands. And if the lab is using the new technique for identifying them, and is trained at interpreting them, then the percentage would be very high. But, I doubt that this is universally the case. Those of us with negative LPs should call the supervisor of the lab that ran our tests and see it they use IsoElectric Focusing with the regular blotting or fixation.
This is new information on O-Bands. I have never posted this before.
Quix
It sounds like you really have a good neuro! Sounds like his staff is lacking in people skills though... :) But it is always good to keep up on what is going on with your own body, and you have every right to be concerned if your case is more unusual. Have you been able to discuss your worries with your neuro since all the latest info came in?
The fact that he spends 15 or 20 minutes with you talking at each visit is impressive! It doesn't sound like much, but doctor time is kinda like dog years... :) 20 minutes with a neuro is great! Mine is like that too... if you don't feel rushed and feel like he is listening and addressing whatever your questions are, that's wonderful.
Have you asked Quix for her input? As a physician, she will have invaluable advice - she knows so much about symptoms and disease processes and tests and results. And she obviously is a GREAT doctor! I think her patients were probably crushed when she could no longer practice...
Let me know if there's any way for me to help... :)
Rita
The fact that he spends 15 or 20 minutes with you talking at each visit is impressive! It doesn't sound like much, but doctor time is kinda like dog years... :) 20 minutes with a neuro is great! Mine is like that too... if you don't feel rushed and feel like he is listening and addressing whatever your questions are, that's wonderful.
Have you asked Quix for her input? As a physician, she will have invaluable advice - she knows so much about symptoms and disease processes and tests and results. And she obviously is a GREAT doctor! I think her patients were probably crushed when she could no longer practice...
Let me know if there's any way for me to help... :)
Rita
MY NEURO SEEMS TO BE VERY CARING. HE TREATS ME LIKE A PERSON AND NOT JUST A CASE. HE ANSWERS ALL MY QUESTIONS WITH CONCERN AND ANSWERS THEM ALL. IF HE DOESN'T KNOW HE WILL FIND OUT BY RESEARCHING IT. FOR EXAMPLE I READ ABOUT A CONDITION CALLED SUSAC'S SYNDROME. IT HAD A LOT OF MY SYMPTOMS VISION , SENSITORY HEARING LOSS( I for got to list vibrations in my ears ) and lesions in the corpus collosum. I CALLED HIS NURSE AND TOLD HER THAT I WANTED TO ASK HIM ABOUT THIS POSSIBILITY( you know how it works. you call the nurse,then she asked the doctor, then she tells you what he says) ANYWAY SHE SAYS TO ME IN THIS SNIPPY VOICE " I THINK THE DOCTOR WITH HIS EXPERTIESE WOULD KNOW IF THERE WERE ANOTHER POSSIBILITY. I SAID I'M SURE HE DOES BUT COULD YOU ASK HIM ANYWAY. 30 MIN LATER HE CALLS ME BACK, NOT HER! HE SAYS WHO TOLD YOU ABOUT SUSAC'S? I SAID NO ONE DID I READ ABOUT IT MYSELF. HE SAID I JUST READ ABOUT IT AND I DON'T WANT TO CLOSE THE DOOR ON IT UNTIL I GET MY RADIOLOGIST TO STUDY UP ON IT. HE ALSO ORDERED A HEARING TEST. THE RADIOLOGIST SAID THE LESIONS IN SUSAC'S WERE MORE CENTRALLY LOCATED. AND THE HEARING TEST WAS NEGATIVE, SO THIS WAS RULED OUT.BUT THE POINT IS HE TOOK THE TIME TO CHECK IT OUT, HE EVEN SAID IT WAS INTERESTING TO KNOW ABOUT THIS INCASE HE EVER COMES ACROSS IT. HE WASN'T OFFENDED.
I WANTED TO TELL YOU ABOUT HIM TO TRY TO LET YOU KNOW THAT I DO LIKE HIM AND I THINK HE IS A GOOD DOCTOR, BUT MY CASE IS SO UNUSUAL AND THAT WORRIES ME SOMEWHAT.
TO ANSWER YOUR QUESTIONS. YES HE DID DO A COMPLETE NEURO EXAM THE FIRST TIME IT SHOWED VIRTIGO ALL CRAINIAL NERVES AND REFLEXES WERE NORMAL. HE LOOKS IN MY EYES EVERY TIME I GO THERE WITH A FLASHLIGHT IN THE DARK. AND HE WHACKS ME WITH THAT HAMMER IN THE ARMS WHERE THE ELBOW BEND IS, THE KNEE'S . AND THEN ASK IF THERE ARE ANY NEW SYMPTOMS. AND THEN WE USUALLY TALK FOR 15 TO TWENTY MIN. THE VIRTIGO IS ALMOST GONE . THE HEARING DOCTOR DONE A TEST CALLED A 3 PACK. THEY BLEW COLD AIR IN MY EARS FIRST AND THEN WARM.I GUESS THE PURPOSE WAS TO MAKE ME DIZZY AND THEN SEE HOW LONG IT TOOK ME TO BECOME ORIENTED AGAIN. THEY ALSO MADE ME LAY DOWN ON A TABLE AND MADE ME HANG MY HEAD OFF THE END,WITH THEM HOLDING MY HEAD UPSIDE DOWN FOR SEVERAL MIN TO SEE HOW DIZZY I GOT. HE ALSO CHECKED MY OCCULOMOTER MOVEMENTS. THEY WERE TRYING TO SEE IF IT WAS FROM DAMAGE TO MY INNER EARS. THEY ALSO CHECKED THE MAIN NERVE IN THE EAR TO SEE IF THE NERVE WAS SENDING MESSAGES TO MY BRAIN AT THE RIGHT SPEED. EVERYTHING IN THESE TEST WAS NORMAL. I HAD THE VIRTIGO ABOUT TWO MONTHS AFTER THE ONSET, AND NOW IT IS ALMOST GONE. THE HEARING DOCTOR THINKS THE VIRTIGO IS FROM THE VISION CUT AND WANTS ME TO GO TO VISION THEREPY.
ADEM SOMETIMES RESOLVES PARTIALLY OR COMPLETELY IF TREATMENT IS INITUATED EARLY. WHICH IN MY CASE BY THE TIME THEY FINALLY TOOK ME SERIOUSLY AND GOT ME TO A NEURO THE ACCUTE PHASE HAD ALREADY PAST AND THE STERIODS WOULD NOT HELP. IF YOU SURVIVE ADEM YOU ARE USUALL Y ARE LEFT WITH SOME DEFICIETS THAT MAY GET BETTER OR MAY BE PERMINENT.
I WANTED TO TELL YOU ABOUT HIM TO TRY TO LET YOU KNOW THAT I DO LIKE HIM AND I THINK HE IS A GOOD DOCTOR, BUT MY CASE IS SO UNUSUAL AND THAT WORRIES ME SOMEWHAT.
TO ANSWER YOUR QUESTIONS. YES HE DID DO A COMPLETE NEURO EXAM THE FIRST TIME IT SHOWED VIRTIGO ALL CRAINIAL NERVES AND REFLEXES WERE NORMAL. HE LOOKS IN MY EYES EVERY TIME I GO THERE WITH A FLASHLIGHT IN THE DARK. AND HE WHACKS ME WITH THAT HAMMER IN THE ARMS WHERE THE ELBOW BEND IS, THE KNEE'S . AND THEN ASK IF THERE ARE ANY NEW SYMPTOMS. AND THEN WE USUALLY TALK FOR 15 TO TWENTY MIN. THE VIRTIGO IS ALMOST GONE . THE HEARING DOCTOR DONE A TEST CALLED A 3 PACK. THEY BLEW COLD AIR IN MY EARS FIRST AND THEN WARM.I GUESS THE PURPOSE WAS TO MAKE ME DIZZY AND THEN SEE HOW LONG IT TOOK ME TO BECOME ORIENTED AGAIN. THEY ALSO MADE ME LAY DOWN ON A TABLE AND MADE ME HANG MY HEAD OFF THE END,WITH THEM HOLDING MY HEAD UPSIDE DOWN FOR SEVERAL MIN TO SEE HOW DIZZY I GOT. HE ALSO CHECKED MY OCCULOMOTER MOVEMENTS. THEY WERE TRYING TO SEE IF IT WAS FROM DAMAGE TO MY INNER EARS. THEY ALSO CHECKED THE MAIN NERVE IN THE EAR TO SEE IF THE NERVE WAS SENDING MESSAGES TO MY BRAIN AT THE RIGHT SPEED. EVERYTHING IN THESE TEST WAS NORMAL. I HAD THE VIRTIGO ABOUT TWO MONTHS AFTER THE ONSET, AND NOW IT IS ALMOST GONE. THE HEARING DOCTOR THINKS THE VIRTIGO IS FROM THE VISION CUT AND WANTS ME TO GO TO VISION THEREPY.
ADEM SOMETIMES RESOLVES PARTIALLY OR COMPLETELY IF TREATMENT IS INITUATED EARLY. WHICH IN MY CASE BY THE TIME THEY FINALLY TOOK ME SERIOUSLY AND GOT ME TO A NEURO THE ACCUTE PHASE HAD ALREADY PAST AND THE STERIODS WOULD NOT HELP. IF YOU SURVIVE ADEM YOU ARE USUALL Y ARE LEFT WITH SOME DEFICIETS THAT MAY GET BETTER OR MAY BE PERMINENT.
Hi Rita...just wondering...it doesn't say in your profile but can I ask where you are from? I am looking for a dr. that feels like he knows what he is doing and I would like to feel like I am a person not a case...I am in Alberta, Canada
Rena
Rena
Your doc sounds cautious and caring... :) And truly, much in medicine is an art as well as a science. Alot of things aren't necessarily clear cut, and different doctors may call them in different ways. I don't have any really good advice... maybe Quix will know what to tell you... :) If you are not totally comfortably with the current plan, could you get a 2nd opinion? It could muddy the waters, but it could wind up making you feel better in the end - hard telling.
All I know is that for me, if I have the feeling that my doctor knows what he's doing and is looking at me as a whole, as a PERSON not a "case", then I'm in good hands and we go from there. I've also found that the best doctors I have had over the years will listen to my concerns and questions and suggestions and not take it as an insult. And a doctor who will admit he doesn't know everything and doesn't have the answer but wants to find out.... that is the one I will follow... :) Arrogance is usually a sign of insecurity I have found.
Did your neuro do an exam in his office? Did anything show up abnormal with that? Has it been repeated to see if there have been any changes? Are there permanent deficits with ADEM or does it all resolve? Just wondering... :)
Rita
All I know is that for me, if I have the feeling that my doctor knows what he's doing and is looking at me as a whole, as a PERSON not a "case", then I'm in good hands and we go from there. I've also found that the best doctors I have had over the years will listen to my concerns and questions and suggestions and not take it as an insult. And a doctor who will admit he doesn't know everything and doesn't have the answer but wants to find out.... that is the one I will follow... :) Arrogance is usually a sign of insecurity I have found.
Did your neuro do an exam in his office? Did anything show up abnormal with that? Has it been repeated to see if there have been any changes? Are there permanent deficits with ADEM or does it all resolve? Just wondering... :)
Rita
THANKS FOR THE INFO. MY PROBLEM IS THAT THE NEURO IS TRYING TO RULE O
OUT ADEM. IT STANDS FOR ACCUTE DESIMMINATED ENCEPHALOMYELITIS,
WHICH IS INFLAMATION OF THE BRAIN AND OR SPINAL CORD. ADEM AND MS ARE
STRIKINGLY SIMILAR TO EACHOTHER BOTH CLINICALLY AND RADIOLOGICALLY. I
HAD A LOT OF THE ACCUTE MENTAL STATIS CHANGES AND A DEPRESSION OF
CONCIOUSNESS THAT GOES ALONG WITH ADEM. I LISTED ALL OF MY
SYMPTOMS IN THE ORDER THAT THEY PRESENTED IN THIS ACCUTE ATTACK ON
THE FORUM RESPONDING TO YOUNG AT HEART. ADEM HAS MULTIPLE WHITE
WHITE MATTER LESIONS, WHICH I DO, BUT USUALLY IS NEGATIVE FOR
O BANDING. MY NEURO TOLD ME THAT IT STILL COULD END UP BEING MS. I
ASKED HIM IF HE THINKS I WOULD HAVE HAD SOMETHING NEW ON THE MRI IN
TWO YEARS TIME. HIS ANSWER WAS I WOULD HAVE EXPECTED TO SEE SOME-
THING IN THAT LENGHTH OF TIME. HE SAID THAT SOME OF THE PATIENTS OUT
THERE WITH ONLY ONE EPISODE OF DEMYLENATION ARE BEING TREATED AND
SOME ARE NOT. HE SAID THAT HE FEELS THAT THERE ARE SOME PATIENTS ON
MS MEDICATION THAT DID NOT ACTUALLY HAVE MS. HE SAID THAT HE DIDN'T
WANT TO START ME ON A LIFE LONG MEDICATION THAT HAS MANY SIDE
EFFECTS WITHOUT BEING SURE THAT THIS IS MS AND NOT ADEM. HE SAID IN HIS
OPINION THAT BECAUSE OF THE STUDY THEY DID THAT SUGESTED TREATING
PATIENTS WHO HAVE ONLY HAD ONE DEMYLENATING EVENT, THERE WERE A
LOT OF PEOPLE ON MS MEDS THAT MAY NOT ACUALLY HAVE MS. ESPECIALLY
IN PATIENTS LIKE ME WHERE THERE IS A DOUBT ABOUT THE DIAGNOSIS. HE
SAID HE DID NOT WANT TO DX ME WITH MS JUST FOR THE SAKE OF HAVING A
DX. HE WANTS ME TO HAVE SCANS ONCE A YEAR NOW INSTEAD OF EVERY SIX
MONTHS SINCE THE PAST TWO YEARS HAVE SHOWN NO NEW LESIONS OR NO
NEW CLINICAL SIGNS. HE ALSO TOLD ME THAT 3 OUT OF 5 NEURO'S WOULD
PROBALLY GO AHEAD AND DX ME WITH MS, BUT TWO WOULD NOT WITHOUT A
SECOND EVENT. I DON'T KNOW WHAT TO DO. HE IS A VERY CARING DOCTOR AND
HE SEEMS TO HAVE DONE ALL THE TEST TO RULE OTHER THINGS OUT. BUT YOU
CAN'T DISTINGUISH BETWEEN MS AND ADEM UNLESS THEY TEST YOUR FLUID IN
THE ACCUTE STAGES, WHICH MINE WASN'T CHECKED UNTIL 8 MONTHS INTO THIS
BECAUSE OF THE DELAY OF GETTING ME TO A NEURO. OR UNLESS THERE IS A
SECOND EPISODE WHICH THERE HAS NOT BEEN . ANY IDEAS?
OUT ADEM. IT STANDS FOR ACCUTE DESIMMINATED ENCEPHALOMYELITIS,
WHICH IS INFLAMATION OF THE BRAIN AND OR SPINAL CORD. ADEM AND MS ARE
STRIKINGLY SIMILAR TO EACHOTHER BOTH CLINICALLY AND RADIOLOGICALLY. I
HAD A LOT OF THE ACCUTE MENTAL STATIS CHANGES AND A DEPRESSION OF
CONCIOUSNESS THAT GOES ALONG WITH ADEM. I LISTED ALL OF MY
SYMPTOMS IN THE ORDER THAT THEY PRESENTED IN THIS ACCUTE ATTACK ON
THE FORUM RESPONDING TO YOUNG AT HEART. ADEM HAS MULTIPLE WHITE
WHITE MATTER LESIONS, WHICH I DO, BUT USUALLY IS NEGATIVE FOR
O BANDING. MY NEURO TOLD ME THAT IT STILL COULD END UP BEING MS. I
ASKED HIM IF HE THINKS I WOULD HAVE HAD SOMETHING NEW ON THE MRI IN
TWO YEARS TIME. HIS ANSWER WAS I WOULD HAVE EXPECTED TO SEE SOME-
THING IN THAT LENGHTH OF TIME. HE SAID THAT SOME OF THE PATIENTS OUT
THERE WITH ONLY ONE EPISODE OF DEMYLENATION ARE BEING TREATED AND
SOME ARE NOT. HE SAID THAT HE FEELS THAT THERE ARE SOME PATIENTS ON
MS MEDICATION THAT DID NOT ACTUALLY HAVE MS. HE SAID THAT HE DIDN'T
WANT TO START ME ON A LIFE LONG MEDICATION THAT HAS MANY SIDE
EFFECTS WITHOUT BEING SURE THAT THIS IS MS AND NOT ADEM. HE SAID IN HIS
OPINION THAT BECAUSE OF THE STUDY THEY DID THAT SUGESTED TREATING
PATIENTS WHO HAVE ONLY HAD ONE DEMYLENATING EVENT, THERE WERE A
LOT OF PEOPLE ON MS MEDS THAT MAY NOT ACUALLY HAVE MS. ESPECIALLY
IN PATIENTS LIKE ME WHERE THERE IS A DOUBT ABOUT THE DIAGNOSIS. HE
SAID HE DID NOT WANT TO DX ME WITH MS JUST FOR THE SAKE OF HAVING A
DX. HE WANTS ME TO HAVE SCANS ONCE A YEAR NOW INSTEAD OF EVERY SIX
MONTHS SINCE THE PAST TWO YEARS HAVE SHOWN NO NEW LESIONS OR NO
NEW CLINICAL SIGNS. HE ALSO TOLD ME THAT 3 OUT OF 5 NEURO'S WOULD
PROBALLY GO AHEAD AND DX ME WITH MS, BUT TWO WOULD NOT WITHOUT A
SECOND EVENT. I DON'T KNOW WHAT TO DO. HE IS A VERY CARING DOCTOR AND
HE SEEMS TO HAVE DONE ALL THE TEST TO RULE OTHER THINGS OUT. BUT YOU
CAN'T DISTINGUISH BETWEEN MS AND ADEM UNLESS THEY TEST YOUR FLUID IN
THE ACCUTE STAGES, WHICH MINE WASN'T CHECKED UNTIL 8 MONTHS INTO THIS
BECAUSE OF THE DELAY OF GETTING ME TO A NEURO. OR UNLESS THERE IS A
SECOND EPISODE WHICH THERE HAS NOT BEEN . ANY IDEAS?
When I saw my neuro on Wed., he told me that even though he knows now that it's MS, he still would like me to have a LP. He said he wants to see if I have the oligoclonal bands, as that will clinch the MS diagnosis completely. I asked him if I DON'T have them, does that mean I don't have MS and we don't treat it? Nope...he said it's just an extra bit of info he really likes to have, but just because I wouldn't have any bands doesn't mean it's not MS. He said not everyone with MS has the bands, so it's not a definitive test - just another piece in the puzzle. His job is to fit the pieces together... :) He said my symptoms are classic, he's ruled out all the other players, and we will treat no matter what so hopefully we can stop further damage. I thank God I found a doc llike this... Let me know if there's anything I can do to help or if you just need to talk... :)
Bye for now..
Rita
Bye for now..
Rita
You may already know that the "O" bands show inflammation in the cerebral spinal fluid, which is consistent with MS in most cases. It takes time for the body to produce those "O" bands, so they will not always show up in early testing. Ess is right, as time passes, a high percentage of those with MS will eventually show this banding. But less than 98%.
And yes, LACK of banding does NOT rule out MS. But it helps if it is positive, when trying to get a Neuro to diagnose you.
Heather
And yes, LACK of banding does NOT rule out MS. But it helps if it is positive, when trying to get a Neuro to diagnose you.
Heather
The big majority of MSers do have O banding, but not 98%. This total includes long-time patients as well as newbies. It often happens that those earlier in the disease have no CSF disease findings, but as time passes they develop the bands. But not even everyone does this. So lack of bands does not preclude MS.
ess
ess
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