I had a neurology appointment yesterday, to check how I’m getting on since the Alemtuzumab treatment I had in the summer. I always arrive early at hospital to have a wander round the shops in the main concourse and chill with a (revolting) coffee and a spot of people-watching.
I bought some bits and pieces from Boots, including a horrendously overpriced Jamie Oliver sandwich then wandered over to the gift /clothing shop. Who goes to hospital and buys cruise-wear? Or a new handbag? I decided against buying a new sparkly, spangly scarf and went to W H Smiths and looked at the expensive books and bizarre range of food, including tins of baked beans (always makes me smile).
Anyway, I had some coffee with my mum and watched the clock tick round before heading off to the clinic. The appointment went well, although I had to go through those neurological tests again – you know, the ones similar to the tests American cops make you do when they stop you for drink-driving. Touch your nose with your finger and walk in a straight line heel-to-toe. Luckily, I am normal – and not drunk – and didn’t fall over or make a fool of myself.
However, the bad news is that I will need to have another MRI scan next year. If I had to choose between an hour-long lumbar puncture and an MRI, I would choose a lumbar puncture any day. I absolutely loathe small spaces. I am claustrophobic beyond all reason. When I was a kid, my sister locked me in a wardrobe, went for lunch and forgot all about me. Pot-holing as a hobby fills me with horror.
I have had two MRIs and have no idea how I got through them. You’re given earplugs, fitted with a guard to keep your head still and told you can keep your eyes open and look in the mirror set above you. Er, not a chance. My eyes were squeezed shut the entire time. You go in head first and it is terrifying. The magnets whizz round making a racket and it’s freezing cold. Each time, I could feel blind panic rising and each time I chucked my mind to a happy place, anywhere rather than in that Tube of Terror.
So I have seven months to prepare. I will do my yogic breathing exercises, employ visualisation techniques and pretend I am lying on a very cold, hard beach. Any tips from fellow MSers?
Not a big lover of the MRI, I go for the counting method, one one two two and obviously eyes closed
Hi Tony!
Glad it’s not just me… I did the counting thing, trying to keep my breathing from going out of control!
Have a great weekend,
x
and you x
I agree with you there I find the mri scan absolutely terrifying the awful noise and the enclosure of it. Horrible. Someone told me they took a music player in with them but I think that they must have been having a scan of some other part of the body not head/spine. I don’t really see how they did that thinking about it it’s magnets would that be allowed? I am sorry I seem to be confused. Anyway make sure the earplugs are in properly but it’s just got to be got through promise yourself a treat after that may help. My punctuation leaves a lot to be desired today doesn’t it! When you go in for the scan let us know I am sure we will think of you and wish you all the best. X
Hi Sue!
Thank you for your comment. It really is absolutely terrifying, isn’t it! I’ll be having the scan on the first day of my next round of Alemtuzumab so am really hoping that they will give me a sedative, seeing as I will be staying in overnight in hospital. Fingers crossed!
I will let you know when it is – sometime in July probably.
X
Hello, very late to comment on this I’m afraid but stumbled across your blog via MS Society twitter feed and was really interested to see you have had Campath treatement – am I right in thinking this is a sort of chemotherapy treatment? If so my mum is due to have her first course next week.
Anyway, to try and be more useful, try speaking to the hospital where you will be having the MRI scan – my mum found out she could supply them with a CD that they could play to her through headphones while the MRI was taking place – she went for the Archers omnibus, which seemed a sort of punishment to me. Hopefully something similar might be available for you
Best Wishes x
Hi Chloe!
Yup, it’s the leukaemia treatment that takes your immune system out. Touch wood, it’s been excellent so far and I hope it goes just as well for your mum. Lots of rest and pampering afterwards! If she’s got any queries at all, she can always contact me.
And thank you for your tip re. MRI – I didn’t even think of that! Brilliant idea. I’m so petrified I can’t even think straight, lol.
X
I’ve just had my very first MRI scan and was glad of my experience of meditation, visualisation and breathing techniques. I kept my eyes shut for the whole thing, too (head, cervical and thoracic – it took an age!) I moved between breathing deeply and slowly into my dan tien (just below the tummy button, your body’s energy pool), visualising myself in woodland, repeating affirmations (all is well, I am safe) and checking myself for tension and deliberately breathing it out and loosening up.
I almost made myself laugh when it occured to me that with a repetitive, melodic tune, the MRI could have a dance hit on its metaphorical hands!
The staff were methodical, pleasant but not in the mood to chat. It might have put me more at ease if they had been.
Now I have a two week wait for results. That’s going to be harder than one cacophonous hour spent inert, annoyed at how much I was salivating as swallowing made a weird sound in there.
P.S. Happy New Year, Stumbler!
Hi there!
A very happy new year to you too!
I loved your comment about the MRI dance music. It’s a very odd sound and hard to describe. I really hope the results are what you are hoping for!
X
Hey, I just got an MRI of my brain for some weird paresthesias I feel all over that are like cold / wet water and burning etc.
When I swallowed my saliva during the scans I heard a really weird sound in my head that sounded like a tuning fork or something.
I did a search when I got home and I found you post about the same thing Reikiblossom!
I told the tech and he said he never heard of that before. I’ve also had MRI’s before and it has never done that before. My last MRI was a TMJ MRI and it didn’t do it. This one was a brain MRI.
The only thing else I noticed was that it hurt to swallow because of the angle of my neck made it hard to swallow for some reason and I’ve never had that problem in an MRI before, so something was different. Maybe they normally put something under my neck, I don’t know.
I also noticed that once the noise started moving my jaw seemed to modulate it, but just moving my jaw without swelling first would not. Very strange.
I also have TMJD and tinnitus by the way.
Any idea why it makes these noises? I’m kinda scared actually.
Thanks!
Hi there,
sounds pretty scary? I didn’t have that happen to me so I’m not sure what caused it? Could it be anxiety?
I was terrified during my mri as I’m claustrophobic. it was a horrendous experience.
Have you spoken to your doctor about it?
x
Hi Skippy Lamb, I have tinnitus too. No idea what made the odd sound and yes, it was just like a weird tuning fork, wasn’t it? I just assumed it was pressure in my ears. I didn’t think it anything to be frightened of but I agree with Stumbling – talk to your doctor about it.
P.S. my scan came back ‘within normal limits’ and I now have a diagnosis of Functional Neurological Disorder, with a dollop of Chronic Fatigue Syndrome on the side.The FNDhope.org site and private Facebook page are now my lifeline.
I still love to read this blog as it remains quite relevant xx
thanks for replying Reikiblossom! Always good to get different viewpoints 🙂
And thank you for the lovely compliment!
x
Reikiblossom,
I called the MRI place and talked to the technologist there. He was very well educated, unlike the one who was there when I got it done. The daytime guy was part of a program where they had to learn engineering and much more.
He explained that what happened last night for my MRI is that it was probably my Eustachian tubes that were resonating with the magnetic field every time I swallowed.
He said there may have been variables why it didn’t do this in the past such as hydration or any other things like the MRI strength etc.
His explanation made me feel much better. I was scared because I’ve had MRI’s for brain and for TMJ before and they never did that and also the guy there at the time had never heard of it. I also have tinnitus, so I don’t want anything that could hurt me.
The internet is amazing. I was able to do a search and find just you the one other person who wrote about it on the internet and now I have an explanation that I can share with you!
I hope it doesn’t have anything to do with us both having tinnitus. I hope it would happen with anyone and it isn’t indicative of anything, or if it was maybe it could be used as a test.
I’d be really curious to share symptoms and what you are going through. Is there any way I can send you a message to share email addresses? I don’t have fatigue at all. I just have muscle pain, TMJD, numbness below the eyes that feels like drooping, and strange sensations all over that feel like cold water, burning or stinging or itching and several tinnitus. This is all very hard on me.
This sounds very familiar,Skippy Lamb. I’m still on the forum at http://www.mssociety.org.uk as Reikiblossom. You can send me a message there. My avatar has a child’s hand showing a yellow buttercup.
I’ve started a thread on there just for FND as symptoms can be identical (but without the observable neurological damage) to MS.
Thanks, Stumbling, for being a bridge xx
Hi stumbling. I am new to your site and new to this whole experience. I have not been diagnosed yet but I have been practically “ill” in the past 2 months. I hope to get squeezed in for an appointment with a neurologist in the coming week. I have done an MRI and all sorts of blood tests. I have been diagnosed to have a vitamin D deficiency, that’s all. And finally they are sending me to a neuro specializing in MS because they suspect it. Anyway I stumbled upon your blog and decided to drop my kindle and read your blog since your very first entry. I cannot hold myself back anymore and wait til I get to the most recent post you have to leave a comment. You are hilarious! You can describe all the things I am feeling so well and make it sound so funny. Wondering if you have a kindle edition haha
Re: MRI, I know my post is too late but I always have a sedative (xanax) during the procedure. I simply cant get through it. even with the open MRI machine. the sedative worked for me, still with a struggle but i got through it. I fear those 3 letters.
Hi there!
H
Thank you so much! I’ve been thinking about editing the blog and making a Kindle version. See what happens.
Next time I have an MRI, some time in the summer I think, I will definitely take something. The thought if going through all that again, meh.
I hope you get some kind of firm diagnosis soon and perhaps the chance to start some treatment?
X