Technically, you are most likely CIS. Clinically Isolated Syndrome is like MS, but with only one attack, so you can not satisfy the requirements for dissemination in space and time.
I had optic neuritis no other symptoms one lesion and I was told I have MS. I'm on copaxon and not a 100 per that I have MS that the Drs didn't wait long enough before dx me. Has this happened to anyone else.
THE PROBLEM IS THAT THEY REPORT THE DIAGNOSIS CODE TO YOUR INSURANCE CARRIER. ONE DOCTOR CAN SAY YOU HAVE MS AND ANOTHER CAN SAY YOU DON'T AND THE INSURANCE COMPANY WITH TAKE THE ANSWER THEY LIKE. A NEGATIVE SPINAL TAP DOESN'T MEAN YOU DON'T HAVE MS. 70-90% OF MS PATIENTS HAVE A POSITIVE TEST FOR OCBs. THAT'S IT. 10-30% OF PEOPLE WITH MS DON;T HAVE OCBs.
KEEP IN MIND, THAT UNDER THE REVISED McDONALD PROTOCOL, YOU DO NOT HAVE TO HAVE A POSITIVE MRI OR POSITIVE LUMBAR PUNCTURE TO HAVE MS. THE MRI AND LUMBAR PUNCTURE ARE USED TO SUPPORT A CLINICAL DIAGNOSIS.
BOB.
THANK YOU FOR YOUR ANSWER. THANK GOODNESS YOU FOUND A DOCTOR WHO REALLY LISTENED AND LOOKED FURTHER INTO THINGS. I FEEL LIKE DOCTORS ARE SO AFRAID TO DIAGNOSE THIS DISEASE SO EVEN WHEN THINGS SEEM OBVIOUS THEY ARE HESITANT TO SAY "YES YOU HAVE MS".
MY MRI ONLY SHOWED ONE LESION, SO THAT IS WHERE THEY LEFT IT IN AUGUST. IN SEPT OR OCT. MY SYMPTOMS WENT AWAY AND I FELT LIKE MAYBE THEY WERE RIGHT, IT'S ALL IN MY HEAD. WELL IN DECEMBER MY SYMPTOMS CAME BACK AND ARE STILL GOING STRONG. I KNOW THIS SOUNDS HORRIBLE, BUT I HOPE MY MRI OR MY SPINAL TAP SHOWS SOMETHING. I JUST WANT AN ANSWER AND SOMETHING TO HELP ME FEEL BETTER.
GOOD LUCK AND THANK YOU FOR YOUR ANSWERS!
OH MY GOODNESS! I AM SO SORRY THAT YOU ARE GOING THROUGH THAT. I HAVE BEEN READING ONLINE AND IT SAYS THAT SOMETIMES THE SPINAL TAP COMES OUT CLEAN, BUT A PERSON CAN STILL HAVE MS. THAT SPECIALIST MUST NOT HAVE READ THAT INFORMATION. WHAT A *BLEEP*!!!
THANKS FOR ANSWERING MY QUESTION AND AGAIN I AM SO SORRY YOU ARE GOING THROUGH THIS. I HAVE ONLY BEEN GOING THROUGH IT FOR NOT EVEN A YEAR, I DON'T EVEN WANT TO THINK ABOUT GOING THROUGH IT FOR 2 OR MORE. I CAN BARELY STAND MYSELF RIGHT NOW. I FEEL LIKE I'M TRAPPED IN MY OWN BODY MOST OF THE TIME. IT DOES THINGS I DON'T TELL IT TO DO AND DOESN'T DO THINGS I DO TELL IT TO DO. HURTS AND DOESN'T WORK MOST OF THE TIME.
GOOD LUCK!
VICTORIA
Oh, the test that finally sealed it for me was my spinal tap and not my MRI.
LA
Hi Victoria,
Welcome here! All I can address in your post is your question about the diagnosis being taken back, yes it can.
It happens and happened to me. I had to keep looking for a doctor that was willing to really dig in and figure out what was wrong with me.
I was diagnosed with MS in 2008, undiagnosed in early 2010 and re diagnosed in the spring of 2010.
Needless to say it has been crazy! I hope you find your answer soon.
LA
HI VICTORIA,
I'LL WRITE IN ALL CAPS IF IT MAKES IT EASIER FOR YOU.
QUICK ANSWER TO CAN THEY TAKE BACK YOUR DIAGNOSES? YES.
I WAS DIAGNOSED BY A NEUROLOGIST FOR TWO YEARS AS HAVING MS. I WENT THROUGH A BAZILLION BLOOD TESTS. HAD SEVERAL MRIs OVER A COURSE OF TWO YEARS. HAD ALL THE PAST HISTORY, THE SYMPTOMS, THE LESIONS, A FAILED EVP TEST IN ONE EYE. SINCE MY CASE SEEMED SO "OBVIOUS", THE NEURO SENT ME TO AN MS SPECIALIST TO BE TREATED.
THE MS SPECIAL (HE THAT I WILL NOT NAME BECAUSE I DON'T FEEL LIKE CURSING) INSISTED ON DOING ONE LAST TEST... A SPINAL TAP. IT CAME BACK CLEAN AND JUST LIKE THAT, THE DIAGNOSES WAS TAKEN AWAY AND HE REFUSED TO TREAT ME.
I WENT BACK TO THE FIRST NEURO AND ASKED HER, "WHAT DO WE DO NOW?"
SHE REPLIED WITH "WE WAIT AND SEE..."
"WAIT FOR WHAT?" I GROWLED, "TILL I CAN'T WALK?"
SHE JUST SHRUGGED AND THAT IS WHERE MY CASE STILL STANDS TODAY. I HOPE YOUR OUTCOME IS BETTER THAN MINE. GOOD LUCK.