results of my MRI test...can anyone relate?

[Purplesheep]

Purplesheep, what did you mean to type about contact lenses? I think you might have missed the type out.

I meant to say coloured contact lenses. The radiologist said clear contacts are fine. Sorry, I've been really tired all day so of course I forgot to type the most important part of the sentence. Typical

[leashy11]

Can I just say to anyone who is claustrophobic get a general phobia self help CD before the day and when asked to visualise what your problem is picture being in the MRI then follow the instructions they give you for it. I've had 3 MRIs and the first one I paid for so I chose a shorter machine than usual thinking it would combat the claustrophobia, it didn't! It took 3 tries to get me in the machine after I rolled off the table the first two and stood shaking and sweating and declaring loudly "I can't go in" and the whole time I was in there I panicked about coming back through the tube. The second one was NHS (I'd spent all my savings on physio that didn't help by that point ) and the tube was normal length which translates to my entire body length and the sight of the machine set off a panic attack and again it took me 3 tries to go in. The whole time I felt like I was about to have another panic attack and I literally shook from head to toe for 2 hours afterwards. I told my partner I'd never have another in my life. Last year I got told I needed another. I decided I couldn't go through the panic again so invested in a CD (I'm actually a qualified hypnotherapist but you can't treat yourself and I didn't have time to record one before the big day).

Long story short, I got my brother to take me in case I panicked and I didn't I was fine. Completely calm even when I saw the machine, went in first time no problems and laid in there with a big grin on my face throughout, result! I was astounded and very relieved just in case I have to have more! I wouldn't worry about it now so if you are claustrophobic it takes the panic right out of it.

[hyperbendy]

Hi,im not sure if this is the right place to post this.But a few weeks ago i had an MRI done on both my knees,which are my worst joints affected by my hms.I wanted one to make sure there were no structural problems,breakages etc.It came back saying there is nothing wrong with my knees,which the dr i spoke to today seems to think i should be pleased about.But my knees are so painful i can only walk with a stick and cant touch them as theyre so painful,and they give way frequently.So do i put all my symptoms down to the hms? im worried that now my MRI as clear the benefits agency,which im taking to tribunal later this year,will hear about it and tell me im fit to work,which is rubbish.Im in so much pain every day and i cant sleep at night due to pain in my joints,particularly knees.My fatigue is very bad also,some days i think i cant cope at all.I wondered if anyone else had had similar MRI results? i know way back i had a bone scan which showed up nothing either,but i do have the hms and fibromyalgia diagnosis.

[Eloise]

I have had exactly the same with a MRI of my knee and it seems to be very commonplace with HMS that it doesn't show up on MRIs.

However, I also know of quite a few GPs that have told me that doing an MRI of the knee is pointless as it hardly ever shows anything up - even for people without HMS. They are campagining to have MRI referrals for knees to be banned as they do not provide any additional information to a standard x-ray and good medical examinination and leave most patients feeling like hypochondriacs, when their daft GP or consultant say it is "normal".

[bree]

Hi Hyperbendy

Hi I suffer too with a lot of knee pain and dislocation. I have been told that this is due to my ligament been real lax, which does not show up on an MRI. But you can move my kneecaps a lot, which you shouldn't be able to do. The other thing is that I have slight dysplasia of my kneecaps, which apparently shows up better on an MRI. But apparently its the lax ligaments or the weak muscles which cause most problem!

I understand your frustration, particularly since most of us have gone years without been diagnosed. You want to see something on a scan, to confirm something is wrong. But thats the joy of HMS, most scans are normal.

I get desperate pain in my knees as well, I find its worse if I sit down too much or use stairs. Have you been giving physio exercises for your knees? Really important to strenghten your medial quads. I also find heat helps at night.

It should not affect your tribunal, as you have a diagnosis. It might be an idea to get your rheumy or GP to do a letter explaining your condition.
But you really need to get some physio by somebody who knows about hypermobility to help your knees.
Good luck

[sheppeyescapee]

I can relate, I've had just about every part of me scanned in the last year or so and it all comes back normal. Luckily my GP knows better than that

[hyperbendy]

hi Bree,i did have physio but it was making me much worse,even though the exercises were gentle so for now my physio has discharged me,but i can go back if needed.She also said to wait to see what the pain clinic said.

Hi Hyperbendy

Hi I suffer too with a lot of knee pain and dislocation. I have been told that this is due to my ligament been real lax, which does not show up on an MRI. But you can move my kneecaps a lot, which you shouldn't be able to do. The other thing is that I have slight dysplasia of my kneecaps, which apparently shows up better on an MRI. But apparently its the lax ligaments or the weak muscles which cause most problem!

I understand your frustration, particularly since most of us have gone years without been diagnosed. You want to see something on a scan, to confirm something is wrong. But thats the joy of HMS, most scans are normal.

I get desperate pain in my knees as well, I find its worse if I sit down too much or use stairs. Have you been giving physio exercises for your knees? Really important to strenghten your medial quads. I also find heat helps at night.

It should not affect your tribunal, as you have a diagnosis. It might be an idea to get your rheumy or GP to do a letter explaining your condition.
But you really need to get some physio by somebody who knows about hypermobility to help your knees.
Good luck

[Eloise]

Hi all,

I am due to go for an MRI on my right hip, it will be with the contrast "dye". I was expecting most things written in the letter, but it says that I need to be on days 10-14 of my menstural cycle and to ring and re-arrange if I won't be (I can't really do that as then it would be re-arranged to AFTER I see the consultant next so would have to change that). Has anyone else has this? Seems rather biazzare to me. It also says I need to take a pregnancy test - which seems a bit strange when everything I read says it is much safer the x-rays in pregnancy and they only asked me if i was pregnant when they took the x-ray of my hip a few weeks ago!!

I don't want to re-arrange so I am tempted to lie and say I am on day 12! I will actually be 3 days before my period is due and at the point my hip is usually most painful! (No chance of me getting pregnant)

[Superstottie]

I haven't come across this, I had an MRI a few years back on my abdomen (gall stones) and they just asked if any chance I could be pregnant, but nothing to do with what point of my cycle I was at - all I can think of is it's to make sure you couldn't be pregnant as you usually conceive at 14 days! I would maybe try ringing the MRI dept and asking them why this is, and if it is due to the risk of you being pregnant then you could try explaining that you don't think there is any risk of you being pregnant and see what they say.

[Superstottie]

You intrigues me so I did a quick google - and came across something about breast MRI in women and the fact that it is better to do it in the first half of the cycle due to getting better results when using dye - so this might be the reason, and if you are in the wrong part of the cycle they might not get good results and may have to repeat the scan! I would ring them as if the scan doesn't work you won't have anything to discuss with the consultant anyway.

[ridgie]

Had my second rheumatologist appointment at a different hospital on Monday and he is sending me for an MRI scan of my lumbar region. I've been reading peoples experience on this thread and I actually feel a bit better about what to expect. I'm waiting on my appointment but tbh I don't think the MRI will show up anything. Another 'dead end' probably, I've come to expect it by now. I'd much rather get an MRI scan on my neck as the pain is much worse here. Anyway, just wanted to say thanks for sharing your experiences and I hope I can deal with my appointment just as well!

[madmum]

I am claustrophobic but have had the scans. I find lying still on the hard surface the worse,one scan I was given glasses that make it look like you are not hemmed in. You can take your own music to listen to,that is if you can hear it above the noise.

[Rosie]

Hi all

ridgie - I recently had a lumbar spine MRI, and found it wasn't too bad. The hardest part was lying on my back as I found this so painful. The scan was not definitive but ity shows that I probably cracked a vertabra when I was younger, and this has left a weakness in that place. I am still not sure whether this contributes to my loweer back pain or not, but I haven't yet seen the consultant who first spotted it.
I did explain to the lady doing the MRI that I find it really painful to be on my back but the scans didn't take as long as I expected which was good. They also put my legs up on a small block/wedge which made it easier on my SIJs. My problem was muscle pain from trying to keep my legs and hips in the same position.
It is noisy, but i could hear the local radio through the headphones nad that helped to distract me frm the small space I was in.
Good luck

Rosie

[Eloise]

I rung the lady at the MRI. The reason they want to have me go on days 10-14 is to ensure I am definitely not pregnant. This is not due to the MRI - but the injection of contrast that needs guiding via x-ray. I said there would be no chance I was pregnant so she said it would be ok that I can sign that on the day.

I am really not looking forward to having to lay still as it hurts - especially if they have just injected me in my joint!!

[cracker]

i had MRI scans too. they are noisy but u can bring your own music ar the MRI dept had music too. it can be up to 45-50 mins in the tunnel it can be noisy & crampped but it nothing to be scared of & there MRI staff will take care of u if u get scared.

big hugs to anyone who is going to have an MRI or has had an MRI