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I have been looking at all the posts here out of interest as I am to have a brain scan.

There are a lot where people have been asking for help and information but no-one has bothered to reply. I don't know how many members there are in this particular forum but this seems such a shame. It is certainly in direct contrast to the PMRGCA forum where there are a number of very knowledgeable members and everyone is very supportive. I'm not sure why this one is so different.

Best wishes - and good health -to everyone. Sandra

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  • Maybe there stacked up to the rafters??I am still waiting I think first an MRI on my brain then some other stuff??EEG had one of those before and possibly some kind of dye in your brain ??If I remembered it would help!!I forgot my medication which has not helped...So I guess back to GP on 29th see if there is any news or if the NHS has shut down.So far I am ยฃ400 lighter in neurologist fees and no further on.Than I was last October other than something is wrong it's been said ataxia (I have epilepsy to start with)So goodness only knows what the answer is ?Other than Sandwich short of a Picnic?

  • They are stacked up to the rafters ! Staff told me if they offered appointments at 4.00 AM folk would be willing to attend !

    Forget about paying anymore to Neuros You've worked this out already I'm sure !

    One wanted to treat me aggressively with Immunosuppressants and steroids all the while knowing I'd no conclusive diagnosis even after several MDT Meetings ......and surgery ..... and inconclusive Pathology reports !

    The other was so conservative he didn't want to treat me at all !

    I've stuck with him but on the NHS ๐Ÿ‘

    Neuro stuff is complex and the Neuro Docs often don't all agree ..... it isn't just in my case ๐Ÿ˜

    I too have "unconfirmed" Epilepsy ? History only of 2 Grand Mals 3 years apart - the out for the count Med Emergency ones ! Apparently I'm not likely to ever have any other type...... we'll see ? I'll continue to take the AEDs to be safe and not sorry!

    All the best

    SM ๐Ÿ˜Š

  • Hello Andrea you're right there is very little about brain disease .....even among the Med Pros diagnosis can differ !

    Don't worry about your MRI .....I've had 14 MRIs - some emergency, some routine.

    The best thing to do is to be relaxed and as mindful as you can. Also a biggie - ask the Radiographer to keep you informed of how many mins the next blast (of loud noise) is going to be. They're usually 3 5 or maybe 8 mins long where you really can't sneeze, cough, scratch an itch etc but then there's a silent break in between each set of blasts when you can cough etc

    You'll wear earplugs and headphones - forget about the option of hearing recorded music it's just irritating and you can't hear it anyway when the machine is taking the pictures ! Just sing your favouite songs or tunes into yourself. Songs are usually 3 or 4 mins so you know how much longer you've got to go before the noise is over. If it's a longer series of noises - sing your song twice ๐Ÿ˜

    Definitely definitely ask the Radiographer to chat to you in the silent times (between the blasts of noise) She'll ask if you're ok and she should tell you how long the next series of images will take ( the 3 ,5 or 8 or whatever mins) .

    I've only ever had to reprimand a Radiographer once - cheeky madam couldn't have given a damm about me ! The important one ! The Patient !

    She was in training - I suggested she could do with some even further training in social and clinical skills ๐Ÿ™„ There's always one !

    I'll not lie - it is claustrophobic ๐Ÿ™ƒ You just have to be mindful, know that's it's not forever and just put up with it ! Mine usually last about 45 mins - some have been an hour, some have been less. Try if you can not to press your 'panic button' It only means you've got to come out and then go through the whole carry on of going in again ๐Ÿ™ˆ

    If there's a 'contrast' needed (I think you mentioned it ?) you'll have a small cannula in your arm to deliver the dye into your brain. You can't feel it travelling in there - it's just to make the images clearer for the Radiologist (Doctor/Consultant) to read. He's welcome to his job ! Imagine sitting reading intricate brain scans 24/7 ! Not a lot of bedside manner required there then !

    It's a brilliant diagnostic machine with no radiation which is a big thing for me ! The newer ones are not just so narrow and therefore less claustrophobic but they're not provided by all health trusts (money again!) for instance there's only ONE bigger new machine here in N.I. for the whole province !

    Remember too a brain scan doesn't require your whole body in the machine. Just up to above your waist. You'll still feel connected to the room. Make sure they place the little mirror correctly so you can see into the room a bit. That tends to connect you - sight and sound thing together y'know.

    Again,remember, it's the best best way to find out what's going on up there (if anything) and the closer you'll become to knowing more about your condition (if any) Also, importantly, it's not painful and not invasive !

    Having said that, I,still have no diagnosis !!!!!!

    The Neuro surgical team, the Neuro Radiologist and the Neurologist don't agree so I'm left with no diagnosis! Such is the intricate nature of Neurology

    Don't be tempted to expedite things by paying a fortune privately (unless you can and want to of course) . If the MRIs are not done in the U.K. under NHS conditions your Neuro team won't take a blind bit of notice ! In fact some of the Private facilities don't have the newer stronger ( more diagnostic ) machines anyway .....we just don't know about it ! Been there, done all that, both here in N.I. and in Spain. Pointless ! Carried scans home with me from Spain to have the tossed aside !

    Don't expect the first venture into the MRI machine to be your best ! You, yourself, your reaction in dealing with it all, will get better with any necessary repeat scans..... I promise !

    I'm sure this is info overload but I wish someone had told me the tricks .....I'm an old hand now !

    The first one was abroad and I was terrified but I got through it by visualising my darling little granddaughter. It was on her 3rd birthday and I was heartbroken not to be there. That all seems like a hundred years ago.... it's only 5 and a half years.

    I'm sure I've left some things out ?

    If you need any more info please msg back, np at all

    ๐Ÿ‘ S โ˜บ๏ธ

  • Hi Thank you so much for all your replies. I read them with interest and they are much appreciated. Best wishes - and good health! Sandra

  • Susan-Mac

    All your advice is absolutely brilliant. It must be really frustrating for you not to have a proper diagnosis yet.

    I forgot to say. I'm in England and I've been lucky in that I'm to have my MRI on the NHS really soon (this Saturday) after the request by my GP. Ditto all the blood tests. I play golf and will imagine myself playing a round while in the machine - I hope to score well!

    Again, many, many thanks. Let me know when you do, eventually, get your diagnosis. Sandra

  • Np Sandra you're welcome !

    It's been going on so long I'm diverted into dealing with all my Autoimmune diseases ......funny enough extensive research leads me to suspect there's an inflammatory connection !!!!!! We'll see ?

    Just waiting for a result of a recent MRI ..... I always shelve thinking about the result. There's little point wasting precious living time worrying about what might be and what one has no control over anyway !

    Carpe Diem I say ..... that and the 19th Hole ๐Ÿ˜

  • Agree with you about inflammatory conditions. I've got three - all confirmed some years ago. Polymyalgia Rheumatica, Lichen Sclerosis and Hypothyroidism. A fourth wouldn't be a surprise.

    I also agree about the 19th hole!

    Take care. I hope you get yourself sorted soon.

    Sandra