QUIX,
ARE YOU REALATED TO MY MS SPECIALIST,I SEEN HIM LAST WEEK,THE WORDS YOU JUST WROTE HE BASICALLY SPOKE,HE STATED SEVERAL TIMES,WE HAVE TO MANY DRS. THAT WANT TO USE A TEXT BOOK FOR A DIAGNOSIS,HE STATED,IF THEY RELY ON THE TEXT BOOK(REFERRING TO THE MCDONALD CRITERIA,THEY NEED TO GO BACK TO SCHOOL AND RELEARN WHAT,WHY AND HOW IT WAS TO BE INTERPRETED.
HE STATED IN OUR LACKING TECHNICAL SOCIETY,TO MANY PATIENTS,NOT ONLY MS ARE DISMISSED,THROWN ANXIETY MEDS,WHILE DISEASES ARE EATING AWAY AT THEIR SYSTEMS.
HE WAS TRAINING A NEW MS SPECIALIST THAT, DAY,SHE WAS A SWEET HEART.HE ASK IF A PATIENT CAME IN WITH NUMBNESS,BLURRINESS,EYE PAIN,HYPER REFLEXES WHAT WOULD SHE DO,SHE STATED A MRI,HE TOLD HER NO,THEY ARE VERY COSTLY,START OUT CHEAPER AND MORE DIAGNOSTIC WISE,START WITH EVOKED POTENTIALS,EMG/NCS.HE STATED MRI'S DO NOT SHOW EVERYTHING.
HE STATED IF A PATIENT HAD A VEP AND POSITIVE WITH ON ,HAD 1 LESION AND HYPER REFLEXES WHAT WOULD SHE DO,SHE STATED WAIT,OH,HE WASN'T HAPPY,HOWEVER HE GENTLY EXPLAINED,NO IF EVERYTHING HAS BEEN RULED OUT THEN START DMD.HE SAID WHAT YA WAITING FOR A PATIENT TO END UP IN A WHEEL CHAIR.
HE REALLY WENT OVER THE MCDONALD CRITERIA SCORE,AND IT WASN'T MEANT TO STATE IF A PATIENT HAD 2 LESIONS YOU WAIT UNTIL 9.HE TOLD HER IF THEIR WAS LESIONS,YOU FIND THE CAUSE,NOTHING SHOULD EVER BE DOCUMENTED BY A RADIOLOGIST AS INCIDENTAL,IF THERE IS SCARING IN THE BRAIN A DRS. JOB IS TO FIND OUT WHY..
WHAT BLEW MY MIND A WAY WHEN HE STATED SIZE OF A LESION DOESN'T MATTER,HE EXPLAINED,IF A DR. IS WAITING FOR A LESION ON THE OPTICAL NERVES,OR NEAR OR IN THE BRAIN STEM TO BECOME BIGGER,HE NEEDS HIS LICENSED TAKEN A WAY.
I WISH SO MANY HERE COULD SEE HIM HE FINDS THE CAUSE,PLUS HIS GENTLE NATURE,AND HE MAKES YOU SO RALAXED,HES UNCONVENTIONAL,THE FIRST I MET HIM HE ASK ME IF I ENJOYED WALKING MY DUCK THIS MORNING,I'M THINKING,GET ME OUT OF HERE,HIS WAY OF BREAKING THE ICE.
LAST WEEKS APPOINTMENT HE ORDERRED ME AN ELECTRICAL SCOOTER FOR COLLEGE,HIS IDEA,WE TALKED ABOUT THE BANK BAIL OUTS AND HOW DISABLED SINGLE PEOPLE ARE KEPT BELOW THE 150-200% POVERTY LEVEL AND HOW WE NEED TO BE BAILED OUT,WE ARE BEING PUNISHED SOCIETY WISE AS HOW A DISABLED PERSON IS VEIWED,WE OUR FINACIALLY KEPT POOR. BUT AS A COMMUNITY WE ARE THE MOST POSITIVE AND ARE THE ONES ALL TO WILLING TO OFFER A HELPING HAND TO ALL,HE STATED A DISABLED PERSON HAS MORE DETERMINATION THAN A PERSON OF GOOD HEALTH,WE ARE GENERALLY HAPPIER.BUT LABELED.
HE STATED MANY DRS. ARE TRYING ON OUR DISABLED BEHALFS TO GET DISABILITY RAISED SO WE WON'T BE AT A POVERTY LEVEL.HE ALSO STATED MANY MS PATIENTS HAVE BEEN DENIED DISABILITY BENEFITS BECAUSE MS IS ON A RAPID RISE FOR UNKNOWN REASONS.
QUIX--YOUR INSIGHT ON THE MCDONALD SCORE HELPS MANY TO UNDERSTAND IT.
T-LYNN
Thanks for making me laugh today. I needed that!
Michelle
By the way I wobble to the right! If you go to the left, perhaps we can be on dancing with the stars together!
This is very informative post for me. t/y
I can see now why the Urologist became concerned after he took my history for the last two year prior to seeing him for the bladder retention. He told me I needed to see someone who will look at the big picture and stop seeing individual specialists who only look at a narrow set of symptoms. That it is not normal for young women to develop these issues and he always treats them seriously.
He set up the referral to the neurologist (who heads the MS clinic here) and also ordered an MRI (i had it last week but haven't heard back)
Here's hoping I get some answers when I finally have my referral.
I have had different lesions on three brain MRIs over two years and abnormal VEP and have had symptoms for two years which are getting worse and have had everything else ruled out but if my LP comes back negative my MS Specialist will not treat me. All the Neurologist say I will have MS but I am not there yet. I am not sure but am told I don't fit the Criteria.
Alex
Thank you so much for this information!!
Michelle, do you wobble to the left or the right? Just wondering if we'd knock each other down or hold each other up.
Wrote a long reply in this tread last night before the network blanked out on me. Must not have been meant to be read.
Thanks that's a great explanation it will help loads with my appt with the neuro.
I just have one question - if we know that we fit the criteria you describe but the neuro does not agree because he belongs to the 'won't budge on the McDonalds criteria' bunch of neuro's - what do we do Do we just keep going around neuro's until one cracks and gives a dx?
Any advice here welcome
Please keep up this invaluable work here it's much appreciated.
((((hugs)))
Pat
thank you so much for your clear explanation.
Thank you so much for the great explanation you gave here:
So, any doctor that looks at a patient who has had 2 attacks or more and has 2 or more abnormalities shown by the neuro exam or by evoked potential testing and tells them that "they can't have MS unless they have 9 lesions" doesn't know what they are talking about.
One of the things my neuro told me, who is a MS specialist , is that I don't have enough brain lesions shown on the MRI to diagnose MS. She told me I needed 9, and come back in a year and a repeat MRI @ that point. She told me to call if anything changes...and as you know, I have been in some type of flare for about a month now. I am seeing her tomorrow and am fearful that she wont know why I am back and be unwilling to help me. I can already feel my frustration building, but NEED to do something to feel better. I am going to get a second opinion in the future, but am giving her 1 more try. I think she will have more info with this visit than in November. So, we will see and I will continue to march forward...(or a bit wobbly to the side!)
Thanks again for the info,
Michelle
Thanks for the reminder, Quix. I'm sitting here completely nervous because I have clearly had multiple symptoms and multiple attacks over the past eleven years or so, but I have a negative MRI. I have my first visit with a neuro tomorrow, and it's good to get the reassurance that I'm not crazy even if he ends up thinking I am.
It's not fibro, lyme, lupus, thyroid, or RA, at least as far as any of those physicals or tests are concerned. Either I don't fall into the risk categories for any of the other mimics or the symptoms don't fit. I have an aunt with MS.
I have written out a timeline to take with me; I've heard many people on here suggest it and it seemed to make sense. I just hope the guy takes me seriously.
Thanks for your compassion to all of us who know something is wrong but don't have any validation for that.
Thanks Q for this important public service announcement - this is definitely worth repeating with all the newbies here. I hope they will heed your advice and read that other works you cited.
As always,
Lulu