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WHO DO I TURN TO?

I AM SORRY AS THIS MAY BE A LONG POST.

LAST SUMMER I SAW MY NEURO AND HAD A HUGE LIST OF NEW SYMPTOMS. HE DID A QUICK EXAM, SAT ME DOWN AND TOLD ME THAT HE HAD BEEN WORRIED WHEN HE READ MY LIST AS I WAS EITHER SPMS OR RELAPSING VERY REGULARLY. HE SAID NEITHER WAS THE CASE AND IT WAS ALL TO DO WITH “MY MOOD”. I LEFT, CRIED FOR ABOUT 2 DAYS AND DECIDED TO STOP ANALISING EVERY LITTLE SYMPTOM AND TO GET ON WITH MY LIFE.

FAST FORWARD TO NEW YEAR AND I ENDED UP IN HOSPITAL FOR 7 DAYS WITH SUSPECTED ON. WAS GIVEN 5 DAY COURSE OF IV STEROIDS. THE WARD DOCTORS TRIED TO GET MY NEURO UP TO SEE ME BUT HE NEVER SHOWED. I DID SEE THE OPTHAMOLOGIST WHILE I WAS THERE WHO COMMENTED ON ME HAVING A PALE OPTIC DISC. I WAS DISCHARGED WITH THE PLAN OF ME GETTING A BRAIN MRI DONE IN THE NEXT COUPLE OF WEEKS AND THEN TO SEE MY NEURO WITH THE RESULTS.

MRI DONE ON THE 25TH JAN.

SO I WAITED AND WAITED FOR AN APPOINTMENT IN THE POST TO SEE MY NEURO BUT NOTHING. I SAW THE OPTHAMOLOGIST AGAIN AS AN OUT PATIENT IN FEB WHO HAD THE MRI REPORT IN MY FILE AND KINDLY READ IT TO ME. I DIDN’T UNDERSTAND MUCH BUT IT DID MENTION DEMYLINATION. MY EYE WAS STILL NOT BETTER.

ROLL ON ANOTHER COUPLE OF WEEKS AND ABOUT 20 PHONECALLS LATER I FIND OUT THAT MY NEURO HAS STILL NOT SEEN THE REPORT AS HE DID NOT ORDER THE MRI AND THE DOCTOR WHO DID ORDER IT HAD NOT SEEM IT YET EITHER AS IT WAS IN MY FILE IN THE EYE CLINIC. I WAS TOLD THE THE DOCTOR WOULD LOOK AT IT AND IF HE THOUGHT I NEEDED SEEN BY NEURO WOULD THEN SEND IT TO HIM.

3RD APRIL I HAD ANOTHER APPOINTMENT WITH THE OPTHAMOLOGIST WHO WAS HORRIFIED TO HEAR I HAD STILL NOT SEEN MY NEURO. I ASKED HIM IF HE WOULD GIVE ME A COPY OF THE REPORT BUT HE COULDN’T FIND IT IN MY FILE. HE SAID HE WOULD KEEP LOOKING AND IF HE FOUND IT WOULD SEND IT TO ME.

LAST WEEK MY LEFT LEG WENT NUMB AND THE FATIGUE GOT 100% WORSE SO MY NURSE THINKS IM HAVING ANOTHER RELAPSE. SHE HEARD MY STORY AND TRIED TALKING TO NEURO’S SECTRETARY BUT SHE WOULDN’T GET ME AN APOINTMENT. SHE RECOMMENDED GETTING MY GP ON THE CASE BUT SHE DOESN’T HAVE THE REPORT EITHER.

I JUST DON’T KNOW WHERE TO GO FROM HERE. i AM CLOSE TO MAKING A PRIVATE APP TO SEE HIM BUT I DONT WANT MY MONEY GOING INTO HIS POCKET. I HAVE BEEN ADVISED TO CHANGE CONSULTANTS AS HE IS OPENING A NEW PRIVATE CLINIC AND IS CUTTING HIS HOURS IN MY HOSPITAL DOWN FROM 1 DAY A WEEK TO ONLY A HALF DAY.

JUST TO ADD, I FOUND OUT THERE ARE 2 NEW AREAS OF DEMYLINATION ON MY BRAIN. I KNOW THIS ISN’T MUCH COMPARED TO SOME BUT WOULD BE HAPPIER IF MY NEURO KNEW ABOUT IT.

I HAD ALSO BEEN FOR A PROCTOGRAM IN JANUARY AND STILL HAVE NOT HAD THE RESULTS PLUS THE CONTINENCE NURSE WAS MEANT TO GET BACK TO ME IN JANUARY ABOUT (CAN’T REMEMBER THE PROPER TERM) SELF COLONIC IRRIGATION, AND STILL HAVE NOT HEARD FROM HER EITHER.

JUST FEEL ABANDONNED :’(

SORRY I MEANT TO ADD, I GOT THE MRI REPORT SENT FROM MY OPTHAMOLOGIST A FEW DAYS AGO.

You poor thing! what on earth is your neuro playing at?

I can’t really help you, just thought i’d say hello .we are all here for you.

Hope it gets sorted out soon.

Lisax

Thanks you Lisa.

Maybe I am being silly and it’s not important that I see him. My next app is in November but I think as I was meant to see him while in hospital that it’s too long to wait. I don’t know!

Thanks Pat. As you know yourself it just hard to find the energy for it all when you struggle with fatigue x

My MS nurse has decided to up my rebif so at least thats something. I was on 22mg now starting 44mg when my next delivery is due x

I agree,November is too long to wait to see him.

Glad you’re ms nurse is helping but you should really be seeing you’re neuro.As Pat said, get intouch with the hospital manager, this is all wrong.

Ms and all that goes with it is bad enough without all the stress this is bringing you.

Lisa x

Sorry I’ve taken a while to read this. I think you need to see your GP and ask for a referral to someone else. As a new patient (of theirs), you should get an appointment sooner than November, but most importantly, you should hopefully get a neuro that isn’t more concerned with setting up a private practice than he is about his patients :frowning: I think, if I were you, I would try and find out who the best MS specialist is in your area. You could ask on here and also check out the ‘Near me’ function on here (apparently a bit out of date, but a start). Your local MSS branch members may be able to advise too. Then, when you have a name, simply ask your GP to refer you to that person. It’s often best to move to someone with no connection to the previous neuro (eg works at a different hospital). That way there are no preconceptions and no baggage. The other thing you consider is speaking to PALS - they may be able to get things moving with the current neuro, if you want to stay with him. Karen x

Hi, this is a sorry state of affairs for you.

I mentioned my discontment at getting different diagnoses and being pushed between neuros for 14 yrs and got a cold reception. And I didnt complain to PALS, like the MS nurse advised.

But i am sure the referral to a top MS guy was refused because of this…the old boy network perhaps!

Hope things improve for you, `cos this is just pants!

luv Pollx

Good idea to see your GP and ask for him/her to write requesting an appointment.

You also have the rigth to be referred to another neurologist or hospital if you are not happy. Perhpas you could do some research and find out who is most recommended in your area?

It does sound like your current consultant is offering a very poor service. It does seem to me though, that those who shout loudest get the most attention so I would carry on making yourself a nuisance until you are seen or change consultants.

Regards

don’t know what to say really but hang in there and take all the brilliant advice from the other posters and definitely move neuro’s if you are able as this one sounds like a waste of space. Sending virtual support and good thoughts your way.

Max x

Thanks for the replies. Got an appointment to see my MS nurse next week so hopfully she will be able to help. Going to take my MRI report with me too x