Stressful and confusing second head MRI

New diagnosis and before diagnosis
1

I have yet to be diganosed with MS but 3 weeks ago I head a neck and head MRI and 2 weeks later, I receive a letter asking me to go back for another head MRI as they need to take a further view!?

No explanation was in the letter nor have I heard from GP or Neurologist as to why I had to go back for them to have have a further view.

When i got to the hospital, the dept was locked and had to eventually be let in by a porter after my appointment time was due. the assistant turned up late and so did the Radiologist. I was the then told to wait as they equipment wasnt working and could be a while! Eventually I got seen and the assistant (who couldnt even get my name right) asked about being allergic to MRI Dye, so I asked if I was haveing a dye as this has not been mentioned in the letter or anyone contact me to explain why!!! He said I think so, so I asked why have I come back and he just went ‘erm??’ and why am I haveing the dye?? Same answer.

Eventually i was asked to get on the scanner and so asked if I was haveing a dye and he said no!! no one offered to tell me I wasnt haveing one after being told I was and no one offered to tell me why I was back for another MRI!

The scan also had to be stopped cos it hadnt been set up right!!

Because of the stressful circumstances, I was then too scared too ask any more questions in case Laurel and Hardy told me something wrong!!

this has stressed me out and am drawing my own conclusions as to why no one is saying anything!! I also received a letter before going to the second MRI, to advise of a follow up appt with the Neurologist!

has anyone got any advice they can offer me? all i can ask myself is what are they not telling me and its crucifying me right now!!

thank you

Becky

2

Hi Becky

You may have needed another MRI if you moved during it and the image is not that clear. My secod MRI, I had a contrast dye which makes certain areas more visible.

Hope this helps

Ruth

3

I’ve had some mystery disease for 15 yrs now. It comes and goes. It started off with me waking up paralyzed on one side, that lasted several days, but went away. Weeks later it happened again. After that I ve had face drawing, difficulty swallowing, emptying my bladder, migraines, muscles spasms, dizziness, insomnia etc. I woke up completely deaf twice this summer resulting in permanent severe hearing loss in one ear. My neurologist recently did yet another MRI on me and it showed increased t2 signal change in the left and right hippocampal . But, he reorder another MRI and the second one didn’t record any signal change. It seems as if no two scans are the same? Is this normal? I had a spinal tap performed and they found 1 antigen marker but not three ( which I’ve been told is diagnostic) (1 indicated something is going on )? I’m so tired, my arms and hands are loosing strength and I feel like no one gets it! Any insight on the differing MRI results?

4

Hi Becky, if I were you I’d be writing to PALS telling them everything about your experience as that is just not acceptable! Tell them what you have told us. I wish you all the best x

5

Hello Becky When is your next Neuro appointment? You can contact PALS at your hospital, regarding what happened at radiology department. The lack of communication from them, which increased your anxiety is not acceptable. PALS will sort it out for you but it’s up to you. Take care x

6

HI BECKY.

I COMPLTELY UNDERSTAND HOW YOU MUST BE FEELING AT THE MOMENT. JUST OVER 12 MONTHS AGO, I SUDDENLY LOST THE SIGHT IN MY LEFT EYE AND FOUND THAT THE VISION IN MY RIGHT EYE WAS SERIOUSLY INPAIRED. WE WENT TO OUR LOCAL HOSPITAL WERE THEY SUSPECTED A DETATCHED RETINA. FURTHER INVESTIGATIONS RULED THIS OUT AND AFTER SEVERAL MORE VISITS OVER THE NEXT FEW WEEKS, I WAS REFERRED FOR AN MRI SCAN. A SHORT TIME AFTER THIS I RECIEVED A LETTER TELLING ME TO SEE THE OPTHOMOLOGIST. I ATTENDED THE APPOINTMENT AND, AFTER BEING KEPT WAITING FOR NEARLY 4 HOURS, I WAS CALLED IN, GIVEN A QUICK EXAMINATION AND TOLD I COULD GO HOME. MY MUM, WHO HAD TRAVELLED DOWN FROM SCOTLAND TO BE WITH ME, INSISTED THAT THIS WAS NOT GOOD ENOUGH. A FURTHER WAIT OF AN HOUR LATER, AND I WAS CALLED IN TO SEE ANOTHER DOCTOR FOR MORE OF THE SAME. NO MENTION WAS MADE OF THE SCAN AND WHEN I ASKED THEM ABOUT IT, THEY HAD NO RECORD OF ME EVEN HAVING HAD ONE. I COMPLAINED ABOUT THIS AND WAS THEN SENT TO SEE A NEUROLOGIST WHO REQUESTED A RANGE OF TESTS AND TOLD ME THAT HE WOULD SEE ME A MONTH LATER. I DUELY ATTENDED THE APPOINTMENT TO BE TOLD THAT THERE WAS NOTHING WRONG WITH ME AND I WAS BEING DISCHARGED (PLEASE BEAR IN MIND THAT, AT THIS TIME, I STILL HAD NO SIGHT IN MY LEFT EYE AND VISUAL IMPAIRMENT IN MY RIGHT). I WENT BACK TO ME GP WHO PROMISED ME THAT HE WOULD LOOK INTO THINGS.

FAST FORWARD A FEW DAYS AND I RECIEVED A LETTER INFORMING ME THAT I HAD FAILED TO ATTEND MY APPOINTMENT AND AS SUCH, WOULD BE REFERRED BACK TO MY GP. THIS WAS THE LAST STRAW AND I DEMANDED TO GO TO A DIFFERENT HOSPITAL WHICH WAS ORGANISED. HERE, I SAW THE NEUROLOGIST WHO, AFTER RECIEVING MY INCOMPLETE FILE FROM THE LAST HOSPITAL (COMPLETE WITH SOMEONE ELSES NOTES!!), DECIDED THAT THE ONLY THING TO DO WOULD BE TO CARRY OUT A FRESH MRI SCAN. EVENTUALLY, AFTER ALMOST 10 MONTHS, I WAS DIAGNOSED WITH MS. MY DOCTOR ADVISED THAT I CONTACTED PALS, WHICH I DID AND I’M GLAD OF IT. THEY WERE BRILLIANT. I GOT A LETTER OF APOLOGY AND, MORE IMPORTANTLY, I HAVE A DIAGNOSIS WHICH MEANS I CAN START GETTING ON WITH MY LIFE. BECKY, THE IMPORTANT THING IS TO KEEP ASKING QUESTIONS IF YOU AREN’T HAPPY. DOCTORS ARE ONLY HUMAN, THEY MAKE MISTAKES AND YOU SHOULDN’T BE AFRAID TO SAY IF YOU AREN’T HAPPY WITH SOMETHING.

TRY AND STAY POSITIVE, WHICH I KNOW IS EASIER SAID THAN DONE.

THINKING OF YOU.

SARA XXX

7

[quote=rufus]

Hi Becky

You may have needed another MRI if you moved during it and the image is not that clear. My secod MRI, I had a contrast dye which makes certain areas more visible.

Hope this helps

Ruth

thank you Ruth

I hope this is the case

all the best to you

Becky

x

8

[quote=toffee1987]

HI BECKY.

I COMPLTELY UNDERSTAND HOW YOU MUST BE FEELING AT THE MOMENT. JUST OVER 12 MONTHS AGO, I SUDDENLY LOST THE SIGHT IN MY LEFT EYE AND FOUND THAT THE VISION IN MY RIGHT EYE WAS SERIOUSLY INPAIRED. WE WENT TO OUR LOCAL HOSPITAL WERE THEY SUSPECTED A DETATCHED RETINA. FURTHER INVESTIGATIONS RULED THIS OUT AND AFTER SEVERAL MORE VISITS OVER THE NEXT FEW WEEKS, I WAS REFERRED FOR AN MRI SCAN. A SHORT TIME AFTER THIS I RECIEVED A LETTER TELLING ME TO SEE THE OPTHOMOLOGIST. I ATTENDED THE APPOINTMENT AND, AFTER BEING KEPT WAITING FOR NEARLY 4 HOURS, I WAS CALLED IN, GIVEN A QUICK EXAMINATION AND TOLD I COULD GO HOME. MY MUM, WHO HAD TRAVELLED DOWN FROM SCOTLAND TO BE WITH ME, INSISTED THAT THIS WAS NOT GOOD ENOUGH. A FURTHER WAIT OF AN HOUR LATER, AND I WAS CALLED IN TO SEE ANOTHER DOCTOR FOR MORE OF THE SAME. NO MENTION WAS MADE OF THE SCAN AND WHEN I ASKED THEM ABOUT IT, THEY HAD NO RECORD OF ME EVEN HAVING HAD ONE. I COMPLAINED ABOUT THIS AND WAS THEN SENT TO SEE A NEUROLOGIST WHO REQUESTED A RANGE OF TESTS AND TOLD ME THAT HE WOULD SEE ME A MONTH LATER. I DUELY ATTENDED THE APPOINTMENT TO BE TOLD THAT THERE WAS NOTHING WRONG WITH ME AND I WAS BEING DISCHARGED (PLEASE BEAR IN MIND THAT, AT THIS TIME, I STILL HAD NO SIGHT IN MY LEFT EYE AND VISUAL IMPAIRMENT IN MY RIGHT). I WENT BACK TO ME GP WHO PROMISED ME THAT HE WOULD LOOK INTO THINGS.

FAST FORWARD A FEW DAYS AND I RECIEVED A LETTER INFORMING ME THAT I HAD FAILED TO ATTEND MY APPOINTMENT AND AS SUCH, WOULD BE REFERRED BACK TO MY GP. THIS WAS THE LAST STRAW AND I DEMANDED TO GO TO A DIFFERENT HOSPITAL WHICH WAS ORGANISED. HERE, I SAW THE NEUROLOGIST WHO, AFTER RECIEVING MY INCOMPLETE FILE FROM THE LAST HOSPITAL (COMPLETE WITH SOMEONE ELSES NOTES!!), DECIDED THAT THE ONLY THING TO DO WOULD BE TO CARRY OUT A FRESH MRI SCAN. EVENTUALLY, AFTER ALMOST 10 MONTHS, I WAS DIAGNOSED WITH MS. MY DOCTOR ADVISED THAT I CONTACTED PALS, WHICH I DID AND I’M GLAD OF IT. THEY WERE BRILLIANT. I GOT A LETTER OF APOLOGY AND, MORE IMPORTANTLY, I HAVE A DIAGNOSIS WHICH MEANS I CAN START GETTING ON WITH MY LIFE. BECKY, THE IMPORTANT THING IS TO KEEP ASKING QUESTIONS IF YOU AREN’T HAPPY. DOCTORS ARE ONLY HUMAN, THEY MAKE MISTAKES AND YOU SHOULDN’T BE AFRAID TO SAY IF YOU AREN’T HAPPY WITH SOMETHING.

TRY AND STAY POSITIVE, WHICH I KNOW IS EASIER SAID THAN DONE.

THINKING OF YOU.

SARA XXX

Hi Sara,

your situation sounds really horrendus!!

I Cant imagine what its like to lose your sight and then have such appalling shoddy treatment in dealing with your results, especially with the anxiety of not knowing what is wrong and fearing the worst!!

How can they say there is nothing wrong when you cant see??!! im glad you complained and pushed to get diagnosed.

Im sorry to hear you have been diagnosed with MS and hope that you are now receiveing appropriate treatment. At least you can now deal with how to move forward.

Im still trying to understand what MS is all about and ive read so many conflicting things so im yet to get my head around it.

I really appreciate you replying as its good to have such a lot of support from people who understand the circumstances.

all the very best to you!!!

Becky

xx

9

Sorry Reiki but your post must have been delayed. It wasn’t there when I posted mine

10

Oh dear - they must have been asleep during the training session on communications!

Try not to worry. It it far from unusual to be called back for a repeat - it is quite routine. Sometimes a person has harmless dye injected before an MRI because that can tell them more, but this is a particular cause of confusion at many an MRI machine - I do not know why, but it seems amazingly difficult for them to work out whether the commissioning doctor wants dye or doesn’t!

It is horrible, feelng that there is stuff going on that we are not being properly involved in, but this is almost always filtered-word-up rather than conspiracy. I hope that it all becomes clearer soon.

Alison

11

Hi Alison

thank you for your reply

that feels a little more reassuring to hear that. When dont get any information, Your mind fills in the gaps and draws its own conclusions!!

thanks again

Becky

12

Hi Alison

thank you for your reply

that feels a little more reassuring to hear that. When dont get any information, Your mind fills in the gaps and draws its own conclusions!!

thanks again

Becky

13

thank you to everyone who has posted a comment or information for me

The support on this site is great! :slight_smile:

Becky

xx

14

thank you to everyone who has posted a comment or information for me

The support on this site is great! :slight_smile:

Becky

xx

15

Betsy Mullins, we sound very simular…just read your earlier post