Aa
Aa
A
A
A
Close
516780 tn?1296516575

CAN THEY TAKE BACK MY DIAGNOSIS?

HELLO AGAIN.
MY NEUROLOGIST STILL HASN'T CALLED ME TO SCHEDULE MY MRI AND SPINAL.  MY APPOINTMENT WAS ON TUESDAY.  I THINK IT'S BECAUSE I OWE THE OFFICE 30$ FOR MISSING AN APPOINTMENT LAST YEAR ON THE DAY MY HUSBAND DEPLOYED.  PAYING FOR THAT IS NO PROBLEM, BUT I'M JUST WONDERING IF THEY CAN REFUSE TO TREAT ME BECAUSE OF THAT?  SHOULD ASK MY PCP TO REFER ME TO A DIFFERENT NEUROLOGIST?

ALSO CAN MY NEUROLOGIST TAKE BACK MY DIAGNOSIS AFTER MY PCP DIAGNOSED ME WITH IT.  I THOUGHT IT WAS A LITTLE WEIRD THAT MY PCP DIAGNOSED ME WITH IT AFTER ADMITTING SHE WASN'T AN EXPERT IN THE DISEASE AND I NEED TO BE SEEN BY A NEUROLOGIST.  MAYBE SHE DIDN'T DIAGNOSE ME, BUT INSTEAD WAS MEANING IT AS A POSSIBLE DIAGNOSIS.  ON THE PAPER I GOT AT CHECK OUT IT SAYS "YOU WERE DIAGNOSED WITH: MULTIPLE SCLEROSIS, PLEASE FOLLOW UP WITH NEUROLOGIST...." SO THAT MEANS THEY DIAGSNOSED ME OR IT IS A POSSIBLE THING?  

I AM JUST FRUSTRATED.  I'M SURE YOU ALL UNDERSTAND.  MY BRAIN IS JUST NOT WORKING RIGHT WHICH MAKES ME EVEN MORE STRESSED.  I FEEL LIKE IT RESTARTS SOMETIMES.  I WAS DRIVING A FEW WEEKS AGO AND MY BRAIN LITERALLY RESTARTED.  I FORGOT WHERE I WAS, WHERE I WAS GOING, HOW I GOT THERE...EVERYTHING.  IT WAS VERY SCARY SINCE MY 2 KIDS WERE IN THE BACK SEAT AND I HAVE LIVED IN HOLLAND OFF AND ON FOR A LONG TIME SO I KNOW WHERE EVERYTHING IS.  ALL I HAVE TO SAY IS THANK GOODNESS FOR GPS...IT TELLS ME WHERE TO GO AND WHERE I AM GOING.  IF I DIDN'T HAVE THAT I THINK I WOULD GET LOST ALL THE TIME.  HAHA...I CAN LAUGH AT IT NOW THAT IT'S OVER.  BUT IT STILL SCARES ME THAT IT CAN HAPPEN AGAIN.

OKAY...I'M RANTING AND BABBLING ON AND GETTING OFF SUBJECT.  I GUESS I JUST NEED TO TALK AND GET IT ALL OUT.

THANKS
VICTORIA
8 Responses
Sort by: Helpful Oldest Newest
1453990 tn?1329231426
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
1453990 tn?1329231426
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.
Helpful - 0
516780 tn?1296516575
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!
Helpful - 0
516780 tn?1296516575
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
Helpful - 0
233622 tn?1279334905
Oh, the test that finally sealed it for me was my spinal tap and not my MRI.

LA
Helpful - 0
233622 tn?1279334905
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
Helpful - 0
1296528 tn?1272524830
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.
Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease