advice urgently needed

[tigeress77]

Hi everyone

This is difficult.  In oct i had a mri scan which said abnormal area of high T2 signal within the white matter of the left temporal lobe and 3/4 same area of high t2 in the cerebullum.  possible demyelination.

My problems have progressed to all ms symptoms including, muscle spasms and jerking, numbness, tingling, tight muscles, difficulty in swallowing, balance, co ordination etc.  

However my neuro has discharged me because he is disagreeing with the radiologist as it showed white spots.  My lumber puncture started off to be abnormal then became clear.  my eeg mainly normal apart from small electrical signal at the back of my head.

They think its mental health,  difficulty in getting second opinion.  

am so stuggling with it all living on painkillers.

[tigeress77]

hi everyone thanks.  my gp has now given up on me and thinks that it is psychosomatic and is writing to my psychiatrist. so frustrated!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Ufrustrated2]

>>so don't let them make you think it is all in your head --that is what we all go through-make someone listen to you

i strongly second that statement !

[sanera]

My spinal tap was a little off normal and my EEG was normal but my MRI showed lesions; white matter is below the gray matter; keep going for opinions; I had to go to three Neurologists before I found one that would listen to me; they are a special breed of human beings and you have to find one you can work with; so don't let them make you think it is all in your head --that is what we all go through-make someone listen to you

[jensequitur]

I agree - definitely look for a second opinion.  It seems to be really difficult these days to find a neuro that will do their job.

[Heather3418]

I would trust a radiologist that does this for a living...than I would a Neuro, that only sees MRI's every now and then.  Perhaps you could set up a meeting with the readng radiologist.  I would bet that the radiologist may have a discussion with the Neuro about his findings and why he feels the way he does about what he saw.

Either way, I would be finding another Neuro.  If you Neuro doesn't know what is wrong, then he needs to answer the question, "Then what IS wrong, doc?"  You deserve an answer to that question, not just drop you.

Heather

[student01]

I WOULD FIGHT TO GET A SECOND OPINION, COLLECT YOUR RECORDS AND CALL EVERY NEURO YOU CAN FIND IN THE YELLOW PAGES, ALSO DON'T SETTLE FOR JUST A SECOND OPINION, GET A THIRD AND FOURTH. I WAS JUST DX IN DEC. WITH AN MRI, TODAY HAD MY SEEG AND EYE TEST DONE. WAITING FOR RESULTS. ALREADY HAVE MY THIRD OPINION SET FOR 4/01 WITH ALL MY TESTS IN HAND I WILL BE SEEING A DR. WHO SPECIALIZES IN MS ONLY AT THE UNNIV OF PENN HOSPITAL IN PHILADELPHIA. I AM CURIOS TO SEE WHAT HE SAYS. BUT KEEP UP THE FIGHT FOR THE ANSWERS THAT YOU DESERVE !!!