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Multiple Sclerosis Community
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380677 tn?1199983468

Question for ya "young at heart"

I noticed on one of your responses you mentioned that you were diagnosed with MS without having positive MRI's.  Was the doctor who diagnosed you correct?  That is one of my fears, my Doctor thinks I have it but yet my tests keep coming back negative.

Would love to year your thoughts....
7 Responses
147426 tn?1317269232
I'm going to jump in here with your permission, but Lynn will also answer.  She had years of MRI's and no specific lesions.  But, when her diagnosis was made - after years of disease and accumulating disability - she did have a "positive MRI."  It was positive for "brain atrophy (shrinkage)" and for something called "black holes" where areas of the brain have died and are being reabsorbed by the body.

The MRI can be abnormal in more than one way.

I think a lot of the more mediocre neuros look only for the T2 hyperintense lesions of a specific size in specific locations and don't see anything else.

She'll give her her thoughts, and man! does she have them.

Lynn, you're on!

Quix
380677 tn?1199983468
Thank you for jumping in...I love this site and all the great information I am gaining.  I am very newly diagnosed (or potentially diagnosed) and feel so much better in talking with each of you.

This is all so new to me.  I told my Neurologist that I know something is wrong and do not want to find out 2,3 or 5 years down the line we could have done something about it.  That is my biggest fear!  Hopefully this will not come true!

Alright Lynn, I am all EARS!!!!

Trace
Avatar universal
I WAS ORIGINALLY DX'D WITHOUT LESIONS OR AS MANY NEURO'S WOULD CALL A NORMAL MRI.BUT MY BRAIN HAS ATROPHY AND BLACK HOLES AS QUIX HAS STATED.

MANY NEURO'S WOULD CLASSIFY THESE FINDINGS AS NON-SPECIFIC,NORMAL OR WE'LL BRUSH IT UNDER THE CARPET AND SHE'LL GO AWAY.

ONLY 5% OF THE MSERS DX'D WITH A NORMAL BRAIN MRI HAVE CLASSIC MS ATTACKS,SYMPTOMS AND ARE POSITIVE IN OTHER TEST SUCH AS EVOKED POTENTIALS,LP,SPINE OR C-SPINE.

YES, MY DR WAS CORRECT AND I CHOSE TO IGNORE HIM IN 1998,REDIAGNOSED 1 YEAR AGO..

IF YOUR DR IS CONVINCED THAT INDEED ITS MS THEN THERES OTHER TEST,C-SPINE AND THORACIC MRI,THE EVOKED POTENTIALS,VISUAL,SOMATO-SENSORY,BRAIN AUDIO EAR RESPONSE AND FOR GOOD MEASURES WE CAN THROW IN A VNG (DONE BY AN ENT) PLUS THE LUMBAR PUNCTURE.

BEFORE GOING THIS ROUTE MAKE SURE THAT YOUR DR HAS RULED OUT ALL THE MIMICERS---B12,LYME(QUIX IS GONNA SHOOT ME)PERIPHERIAL NEUROPATHY,SJORJENS(SP)PINCHED NERVES,THERES OTHERS.

I HAVE SPMS AND OTHER  THAN BRAIN ATROPHY ,BLACK HOLES ,THERES NOW JUST ONE LESION.THERES NOTHING TYPICAL ABOUT MY MS,WELL I'M USUALLY OUT OF THE NORM ANYWAYS(JUST A LITTLE HUMOR)

WHAT TEST HAS YOUR DR RAN BESIDES BRAIN MRI AND WAS THAT WITH AND WITHOUT CONTRAST?

WHY IS YOUR DR SO CONVINCED ITS MS.

WELCOME.

T-LYNN
147426 tn?1317269232
Heyyy!  I always tell people to get checked for Lyme!  Party Foul!

Can't get no respect.

Trace - Lynn is giving you words of gold!  I'll have more to say tomorrow.

Quix
380677 tn?1199983468
To date I have had the following tests: 2 Brain MRIs and 2 Spine (T-1 I think) MRI's (both clean), full nerve study test (i.e. they tazered me for an hour), full blood panel to rule out Lyme and all other diseases that mimic MS (results returned normal today).  He also ruled out the "pinched nerve theory" with the MRIs.  

I have the Evoke Potential test Saturday and Lumbar Puncture on Monday.  He is running all MS related tests to "confirm" his diagnosis but based on the 3 visits I have been to his office, I have failed 2 neurological exams on my right side (i.e. poking me with needles, vibration tests on both left and right hand and foot, strength related exercises on both arms and legs, walking with 1 foot in front of other, walking on heels and toes - (fell down on these walking tests).

He said he thinks its MS due to the "classic" symptoms I am presenting with in his office and these symptoms have not improved in the span of 3 months I have been seeing him.


He does think I have classic fibro symptoms but each visit says I really think this is something more.  He said he didn't want ot "says" yet becuase he didn't want to alarm me but felt I was level headed enough to do the reserach without freaking out.  

If these 2 upcoming tests are negative as well, should I push for the other tests you mentioned above?  I did ask him how many patients he has diagnosed with MS that did not present wiht lesions on any tests and he said "several".  He said they all presented with Lesions later in treatment.

Thoughts....am I on the right track?
297366 tn?1215816651
Wow, it sounds like you have a great, pro-active doctor! I have a lot of the same symptoms, but all my docs say it can't be MS because my MRIs are clear. Hmmmmm. Perhaps not, but then why do I keep getting symptoms when the old ones never go away?

I worry when people here say that they were diagnosed years later. All that time you could be trying to slow things down is now wasted. It's all very frustrating.
Avatar universal
YOU ARE DEFINATLY ON THE RIGHT TRACK,HAVING A GOOD DR. THAT IS PROACTIVE IS A PLUS WHEN DIAGNOSING THIS DISEASE.
I'D WAIT TO SEE WHAT THE NEW TEST RESULTS REVEAL,SEE WHAT THE NEURO SAYS AND THEN GO FROM THERE.YOU COULD BRING THEM UP IN CASUAL CONVERSATION.
MOST NEURO'S ARE VERY DISMISSIVE WHEN TEST ARE NEGATIVE.

THE EARLIER THE DIAGNOSIS THE BETTER THE PROGNOSIS IN THE FUTURE.

T
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