Neuros, can't live with em , can't ...

[cjacks]

I had my second neuro appt yesterday, to go over MRI .  Neuro says I have three, maybe four lesions  about 3-4mm each and many (a dozen , at least ) little ones, but he doesn't count them?? He took time to look , which was good . Then he said its probably MS and  not  WMD.. but then he said " why don't we reevalute in six to twelve months with another MRI. "   AAAhhhh what  ???? and things were going so well , now I had to start thinking really fast. How do I get what I want without p*ssing this guy off.

I asked if I shouldn't have some of the testing , like LP VEP, etc. He looked dumbfounded...  then said ' you don't want an LP, things go wrong then you'd need a blood patch' ...   blah blah blah... and I'm thinking  'Oh man, what's he up to '..  I mentioned fluoroscopy and he says ' nooo  you don't want that , you'll be something??'  ( do they strap you down for that ??)  that was my impression of his response.

Soo remembering   ' How to manage your neurologist ' ,  I told him I wanted us to be a team and I needed to be able to ask questions and state any of my concerns  , so we as a ' team' we  could talk thing over.  He nodded a yes ... This is when I let him have .. I told him that I also had people in my life who were VERY concerned and who had some input, one being my bother-in-law , who's a physician  ( he is but doesn't know about this yet ,  sorry I told a fib ), neuro changed directions so fast I almost got whiplash!     chalk one up for US...

I'm already set up next week for VEP and NPE for a baseline and the hospital will call with the LP date  What is the nerve conduction test called , he played dumb with this too, but I think there is something of that sort included ...   Did I forget any???  Could someone let me know, if I did. I'll call his office and ask for it too..thanks

I still only got the usual three min. exam.    

If it were not for this forum , my life would be in such a mess right now..  Its hard to image....Thank you to everyone for all of your courage and wisdom, for  taking the time to share it with us who are residents of the Great Land of Limbo..  and of course all the newbies

Cowboy-  I was contemplating what we should do about your doc , how about setting him adrift on an ice flow ,  and after all my testing is done we might give him a companion , my doc   :)  

Love and hugs       Jo
..

Quix , what can I say ? I'd be in a heap of  ***** if you were not here . Be well , hope you had a super Birthday, sorry I missed it.  I will light a candle for you .

[grannyhotwheels]

You go Jo!  Yippppppie!  Howa bout that!  I tell everyone I know this is the greatest forum or family I know.  This is just another bit of proof for others to see.

Jo would have never been able to do that had Quix and some of the others not been able to give the appropriate information needed.  This forum gave Jo the courage to stand up and be an advocated for the cause.  I'm lovin it!

I'll be praying,
Carol

[Quixotic1]

Jo,  WHERE ARE ALL YOU GUYS FINDING THESE Dodo-Docs!!

No more shopping at NURRO'S 'R' US !!.  

Okay, I have a lot to say about this so-called Nurro Consult you had, before we put this guy out on the ice flow with Cowboy's Dodo-Doc.

First, BRILLIANT!  You saw the Promised Land slipping away through the fingers of yet another ignorant and lazy doctor.  "Looks like MS.  Let's check it in another year???!!!!!!!!!!!"  That certainly goes down in the books!   WE are going to add invoking a family member or friend (I will be either for anyone who needs it) who has become concerned and offered some recommendations.  That was SO SMART!  And, I can just see his head whirling around like Linda Blair in "The Exorcist!"  He was caught in his laziness and HE KNEW IT!

But, he revealed some very important info about himself.  He is likely incompetent to do the LP.  So, please make sure that it is being done by the radiologist and not him.  The same goes for all other tests.   I echo the comments made on the other other thread about running as fast and as hard as you can from this guy, because he is truly dangerous!  But, get what you can out of him first.  If the LP is going to be done by radiology, then good.  But, the right things need to be ordered.  They should have an "MS panel."  But, before the procedure make sure with the radiologist that the proper things for MS are, INDEED, ordered.  I can give you a list.  Radiologists are generally a really nice group of people.

Make sure you get a Visual Evoked Potential VEP.  What is the NPE?

In the meantime, you have got to find a new neurologist.  I would not trust this guy to interpret ANYTHING correctly.  He is really scary.  I didn't go back to read your old posts, just don't have it in me tonight.  But, if you have significant paresthesias (numbness, burning, tingling, etc) in your limbs, you should get a SomatoSensory Evoked Potential also.  Just call the office and say your BIL thinks you need an SSEP and would he order it.  And, were your spine MRIs normal?  If those weren't done, same thing.  He needs to order them.

We'll get what we need out of this guy and then find a real doctor.  You really pulled it off the right way.  Scared him enough to start ordering the right work up, but didn't p*** him off enough to tell you to get lost.  I am so proud!!  This is exactly what we have been talking about.  

WAY TO GO!

Quix

[Rena705]

Way to go...I just don't understand what this dr. figured he could gain by holding back on these tests?  I mean, sure he wants to see you in six months and sure he will be paid for that appointment but even if he does these tests, he could probably justify another appt. in six to twelve months time to see how you are doing?

I am so glad that you are taking this neuro to task and ensuring that he is doing the job that he is being paid for!  You are being pro-active and a self advocate and that is SO important for anyone with a possible disabling disease that relies on meds being prescribed a.s.a.p. after diagnosis!

YOU GO CJACKS!!!

Rena705

[essdipity]

Ah, found this! Please look at my comments in hbananas' Fellow Limbolanders thread.

ess

[young at heart]

JO,

WHAT COMPOSER, A LITTLE FIB DON'T HURT.

GEEZ IS THIS NEURO WAITING FOR HEY-DEY TO FREEZE OVER.LETS SEE 3 OR 4 LARGER LESIONS AND A DOZEN OR SO SMALL ONES BUT HE DOESN'T COUNT THEM,  THIS NEURO MUST OF RAN OUT OF FINGERS AND TOES!!!!!!!!!!

THE UPCOMING TEST AREN'T BAD.THE VEP IS PAINLESS,THE NCS LITTLE UNCOMFORTABLE AND THE LP DONE FLORASCOPIC IS A BREEZE.

I'M GLAD YOU STOOD UP FOR YOURSELF AND ASK FOR FURTHER TEST AND YES WE HAVE TO BE A TEAM WITH OUR NEURO'S,IN RETURN THEY NEED TO COORALATE WITH OUR GP'S.

BEST WISHES WITH YOUR UPCOMING TEST.

YOUR NEURO WAS PROBABLY DUMB FOUNDED BECAUSE YOU WERE SO INFORMED.

FOR COWBOYS NEURO I HEARD THE POLAR BEARS ARE PRETTY HUNGRY THIS TIME OF YEAR!!!!!!!!!!!

T

[Sonaya]

That is fantastic to read a post like this.  Well done.  YOu should be so proud of yourself.
How to manage your Neurologist.....indeed it seems you did.
You go girl!!!!!

Good luck with all your tests.

[thester6474]

Wow, I wish I had your enthusiasm..Your ability to put yourself in the drivers seat..In my experience it seems that the doctor's really underestimate our medical conditions, I mean why shouldn't they?  They do not know how it feels to be in constant agony, esp during the many months of tests..I just had an LP, and to be honest with you, it was not bad at all..My Neuro was very caring and sensitive..The only thing I felt was the needle he used to apply the numbing solution..I also have had the NCV, or the Nerve Conduction Velocity test, it is not bad either..I had this test done along with an Electromyography with my first Neuro..Honestly it did not hurt, that was the only good thing I got from my first Neuro..If you are not satisfied with this Neuro, do remember that their are more out..But beware, because the more doctor's you see, the more headaches...Just weigh your options on that one.

[Amyloo]

Way to handle it.  Get what you need, don't let on that you actually know what you are talking about.  Great job.  Amy

[mokibear]

Way to go girl. You took what could have been a bad appointment and got it turned around. It is too bad that it had to take that but at least now you are getting somewhere.

Coming from limbo land myself, I know how hard it can be when a neuro wants to just dismiss you. Fortunately I have now found one who is getting the ball rolling.

You did so well and should be so proud of yourself. Yeah you!!! As for other tests, I'll leave that to the wise ones but I just wanted to say what a great role model you are for all the others on here who are facing the same problems.

Hugs
Moki