Mri scan

Its been 7 months now, since i was diagnosed with VM.

I have had to say this has to describe it as roller coaster of a ride with the NHS.

From experiencing Visual Disturbances, black outs and head aches for all this time, pain in my joints and in my body, at last they refered me to a neurologist.

As the hospital did not do an LP the evidence to the doctors or whoever has treated me has been inconculsive,but the doctor who saw me at the hospital released me with a letter stating symptoms of VM. So i have been utterly confused by the NHS and their opinions ever since.

I feel let down in everyway,also made to feel like i am making all this up.

The neurosurgeon i saw refered me for a full brain and spine MRI i had this done yesterday.

I did not manage to complete the whole scan as being lay flat and still my head in a cage like contraption, the noise and pain became overwelming, at that stage i had been in the MRI machine for 50 minutes. I came home and slept on and off until today, mentally and physically i feel broken again.

I'd like to know if other people are having the same problems with sound (noise) whether it be people talking and other background noise or simply the television getting too much. I have visual disturbances, white and purple stars and dots and increased floaters in my eyes also a veil of shadows? i have had my eyes tested they say the health of my eyes is fine, i was even tested for glaucoma.

I still ache in all my joints, knees and hips and shoulders (under arms) mostly.

I know i'm making my husband sick with worry as i am usually a very strong person, but frankly i'm not even half the person i used to be.

The Meningitis Trust have been fantastic, offered me all kinds of help, i cannot thank them enough.

It seems this site can help a lot in regards to letting eachother know where we are up to whether we have the same complaints??

9 Replies

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  • o sorry to hear what you have gone threw, you will see on my page all the rubbish i had to go threw with the NHS now sure which was worse the VM or the NHS.

    sound (noise) yes this is part of the VM, but over time it will settle down, you may have to wear ear plugs at night, the way to look at it, your brain is like a computer and has been re booted, and may files will be miss placed, not lost, just not where you would normal find them. TV radio even people you may think you are losing your marbles, but trust me you are not, you may find no matter how many doc you go to they may not be able to help you, i was lucky my doc understood and helped me but the bad news is, there are not all as good as mine

    visual disturbances, white and purple stars and dots and increased floaters in my eyes, i had these up to 5 times a week, went to my doc and he said i was having pain free migraines and gave a fab drug that i just put on my tongue then 10 mins later went away, but that is because my doc listen to me, it may not be your eyes but your blood pressure, and also STRESS trust me your poor body is going threw so much stress at the moment!!!! but you will get better

    ache in all joints, knees and hips and shoulders (under arms) mostly. again this is stress, if you had been in a car crash, you would have marks to show, but you have nothing to show, so many people just do not under stand, TRUST me we do on this site!!!!! for my head i use ice sticks from the £1 shop and VIC in my joints, and a tenns machine (£15) llyods chemist, this will help with back pain, and so much better than pain killers, word of warning try and not keep taking pain killers as too many will bring on headaches, mad i know but true

    making your husband sick with worry get him to read this site, or even better he can post on it as well to get help and support trust me e will need it ,

    usually a very strong person, but frankly i'm not even half the person- with me i thought i had been taken over by the pod people LOL, i was angry, then crying, then angry then rude moody, i could have passed of as a 17 year old with the amount of tantrums i was having, i would forget things, now i have notes all over the place, looks like i have gone OCD ok things to keep in mind, she you will feel like someone else, BUT YOU have been very ill, allow your self to get well, if you feel moody etc, be honest give your husband a pass word mine was FROGS when i said that everyone knew i was going to go on one, if you forget where you are or where you are going, DO NOT PANIC, its ok, just sit and thing sod it,then you will relax and all will come back

    re your comment "feel let down in every way,also made to feel like i am making all this up."

    YES YOU WAS LET DOWN BY THE NHS

    NO you are not making it up, they just have not got a clue, thats why this site will help you, if we was all put on one island, trust me we all would be talking the same language, hence this site is here, for you and your family. so any time you think you are losing the plot natter to us on this site we are here for you also here is more info for you, i hope 1% of this reply helps you.

    BIG HUG Tiga (Mandy)

    call the meningitis hot line which is 24 hour

    Freephone UK number:

    0808 80 10 388*

    Helpline@meningitis-trust.org

  • Mandy -can I ask the name of the drug you got for visual disturbance?

  • it is called maxalt lingua 10mg schmelztabletten it is used for migraines, i suffer from (THANK GOD) pain free ones, when it comes on, i first see zig zags, then my left eye goes blind, but know i can pop on off tablets on my tongue and with in 10 mins all gone away, the strange thing is went to see a so called specialist about it, he said they should not work, well i told him my Dr new me better and knew what would work for me, and thank god i have them, now when at work i can just take it with out anyone knowing how ill i feel, see what your doc says, best of luck

  • Tiga is right in what she says about your after effects. I have to say though that the NHS in Leeds were great with me. I was given a lumbar puncture as soon as meningitis was suspected and treated for bacterial too, as a precaution until the type was identified. Unfortunately, the side effects are not as dramatic as bacterial but can be very long-lasting. I had VM in 16 months ago and still have hearing and visual problems.

    Try to keep positive. I know that's easy to say and hard to do when you're in the middle of all this but it's just about all you can do day to day.

  • you was so lucky it took 2 days 4 doctors and 12 lumbar punctures before they would even treat me, even thou the guy my mom spoke to on the 999 line said i had VM, maybe i should live in leeds LOL

  • Hi duffmond as Tiga has said

    i see these symptoms everyday with the wife after BM

    NHS I cant grumble there after care has been great

    my wife has had 2 MRI

    We got a basic letter that said Brain injury so a follow up with the GP revealed frontal lobe damage

    she has trouble with TV / radio, locating sounds as in 2D/3D Dimension she cant concentrate she cant understand or take things in, talking to more than one person is confusing her short term memory is very poor.she has flash backs nightmares weird thoughts

    I/We do everything for her she cant be trusted with anything from tablets / cooker / going out / left alone etc.if people look at her she looks perfectly normal but she's far from it

    the MRI scan of The Brain it may not show many things but you know your symptoms

    just yesterday for mothers day she bought my Daughters a card and a small present as a thank you. she passed them on last night and then got really upset she realised she'd bought for two daughters when we have three daughters. she just forgot.we have three daughters as i said her memory is dire.the daughter who missed out wasnt upset we sorted that last night after 2 yrs we all know how she is.

    she did see some specialists who did

    Hailing test

    Brixton test

    graded name testing

    executive,language.cognitive.intellectual.memory tests

    she failed everything

    not a lot they could do they did try a controlled drug that is used to treat children with ADHD

    that made her worse.so was stopped i cant remember the name of it i think it started with a "M"

    it may be just time to see how your condition goes. ask about the visual / memory tests

    All the best

  • Thank you so much for your comments, I wish you your family and your wife all the health and recovery and strength you need through all this,I'm so sorry, its such a horrible disease.

    Sarah xx

  • Morning I am 3 yrs post vm I have just read your post and it's like I'm reading about myself. I

    experienced all of the above and the frustration with the NHS! When I went to A&E first they asked me if I had been drinking, I replied no, they eventually said I had labthryntitis i knew it wasnt that as my dad had it some years before, I kept saying it was my head, I think looking back they thought I was nuts! So the doc said they would send me an app for an MRI, and sent me home, I felt so poorly i just went home. No appointment for an MRI showed up, I phoned NHS and they informed me it had never been processed. I eventually had an MRI 9 months later...which only showed lots of inflammation around sinuses.

    I must say I don't know how you got on with the MRI but it really hurt me, h ache got worse felt v unwell. So here I am today, headaches bearable, tired most the time but fatigued intermittently, my personality has changed I'm not as bubbly as before, I'm finding it quite hard to think if the right words to say as I write, I have just recently been sent to hospital for neurology in London and have seen a neurologist there whom gave me an lp / MRI which came back ok but this was expected as been so long. I am having real problems with memory & cognition so am attending a group where we talk about all this stuff, life after a brain injury, cos thats exactly what u have ..So that's me, like the lady said before it does get better but it's a long process, I've been through the frustration time and time again, you think ah I've licked this then bam fatigue Hits u or generally feeling unwell. My advice is give yourself a break, I no how hard it is when you look ok and people can't see there is anything wrong you tend to go with it even if you feel rubbish , DON'T , say your not well, explain, as they won't no if u don't tell them. I hope your MRI went well. Thinking of you. I hope this all makes sense....

    Siobahn x x

  • apologies re the mri, i somehow thought u hadnt had one...I to found it very very difficult, extreme pain and discomfort whilst and after.... nearly passing out.... i had another dec 2012 with lp all was ok,no pain.

    all i can say is i wish i had not pushed myself so hard, looking back i should have listened to my body, rest rest rest

    take care

    xx

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