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Crohn's Disease Forum » Tests for IBD » UK members MRI results


07-01-2013, 03:24 AM   #1
charlottevet
 
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UK members MRI results

Hi all,

Just wondering how long it took for you to hear back from the hospital (NHS not private) about MRI results. My MRI was done around a month ago and still no word, although I did ring a couple of weeks or so ago and ask about when i would hear they just said "your dr has received the results today and we will send a letter to you and your GP shortly".... what does shortly mean?! I went to the GP on friday and they STILL had nothing, as for my letter... nothing. So frustrated, I hate the way they leave me in limbo for months at a time in between appointments, ive been sick for a year, put my life on hold and they cant even bother to get results out promptly !! I know there are hundreds of people also waiting but im sure the NHS could come up with a better more efficient scheme for results than this, its absolutely ridiculous. as happy as I am that we get free health care, they really do take the piss sometimes, if I were a cat or dog with this issue I would have seen the vet and been tested the same week and probably diagnosed within a month and on treatment.

sigh, i should have been a dog in this life...
07-01-2013, 07:54 AM   #2
UnXmas
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The best thing you can do is keep ringing the secretary of the doctor who ordered the test. If you're told it's already been sent to your GP, tell them it must have got lost in the post and ask them to send them again.

In my experience, when test results are normal, they often go missing or take ages to get back to your doctors. When test results are abnormal, they tend to contact you sooner. I suspect that once they see a test is normal and you don't need any urgent medical attention, they get much more slack about making sure results are sent to the right people. So possibly you can take this as a good sign!
07-01-2013, 08:06 AM   #3
charlottevet
 
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thanks for the reply. In a way i was hoping the MRI would have shown something as im still as sick as a dog.... if it comes back all fine god knows whats wrong with me, I might never get better
07-01-2013, 11:45 AM   #4
highlandsrock
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Hi Charlotte

Just checked my last couple of MRI scans. It was a month between having the scan and discussing the result with the consultant in both cases. If the hospital say that the letter has already been sent to your GP, with a copy to yourself, then ask them to send you another copy by email. I think some hospitals refuse to do this because of "patient confidentiality" but I've haven't had a problem communicating this way. You can usually find the relevant email address on the hospital's website or should be able to work it out

Regards, Nigel
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07-01-2013, 11:51 AM   #5
JustAYoungLad
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I had an MRI at the end of May and I haven't heard anything back yet either.

Just got to hope there was nothing alarming on the scans and if there was that I would have been contacted.
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07-01-2013, 01:48 PM   #6
xX_LittleMissValentine_Xx
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You just have to keep chasing them. I don't think they automatically look at all the test results that come back. Maybe the urgent ones.

I agree with unxmas, check with the secretary from the doctor who ordered the tests.

Never assume they will get back to you with results and expect to wait at least a week after you have chased them.
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07-01-2013, 02:29 PM   #7
charlottevet
 
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Hi All. I rang them up today, and apparently on the system it says my gp should already have the letter?! So i told them i had seen my GP on friday and that wasn't the case. she then went "huh....erm.... I'll check whats going on..... oh, they may still be at on Dr X's desk waiting to be signed off then... im not the usual sec as shes off at the moment, i will leave a message for her to chase them up and check things when she get back. Hopefully you should hear SHORTLY" - sigh soooo goodness knows what that means, probably another 2 weeks wait to tell me they haven't found anything I suppose :\

Im sorry to rant guys, it's just been a year and everything feels like its going no where... Im so worried I'll never be ell again and I'll fall behind everyone... never be well enough to meet anyone new, never get married or have kids, just be that sick girl whos a hermit at home
07-01-2013, 02:45 PM   #8
xX_LittleMissValentine_Xx
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You are right to rant!!

It is so frustrating especially if you are unwell. Your waiting for answers so you can get on with your life its not fair. They should realise this is peoples lives they are dealing with.
07-01-2013, 02:53 PM   #9
charlottevet
 
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You are right to rant!!

It is so frustrating especially if you are unwell. Your waiting for answers so you can get on with your life its not fair. They should realise this is peoples lives they are dealing with.
Thank you for being understanding... Im sorry to be such a moaning mini, but its really been getting me down. I have had a really bad few years and I sort of hoped that this year could have been a new start, but then I got sick and everything has just come crashing down again... the future feels uncertain and I don't feel able to do things people my age are supposed to do... worried if they dont get a move on I will fail my course after being on it for 4 years... Ive already had to leave behind my year after taking a year out!

Im so thankful e get free health care and everything, but everything is taking so long ...its hard to stay positive, but i'll try... in fact ill try and get it all out in the venting section lol - though it'll take a brave person to wade through it all.... haha
07-01-2013, 03:21 PM   #10
littlemissh
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It very much depends on what IT system your GP uses to get results.
Many GPs can look at any result done at the hospital as soon as it is reported, so for an MRI it would be about 1 week.
For those that don't have that system there are two options. Some consultants don't send GPs results, they see the patients, tell them the results and then write this in the letter to the GP. Others will write to the GP if they are not seeing the patient for a while or have discharged them.
The problem is that there can be a delay of weeks from the doc dictating the letter to the secretary actually typing it! And then if the consultant wants to check the letters before they are sent, it is delayed even more!

The other option is that your GPs secretary can ring the MRI department for the result. The problem is that they often haven't got the time to chase up consultants results because the consultant hasn't made appropriate arrangements.
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07-01-2013, 03:28 PM   #11
charlottevet
 
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thanks littlemissh, thats a really informative post
07-01-2013, 04:05 PM   #12
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this is all strange to me ..as I have mentioned I .for the last 17 years have been wrapped up with spinal problems following a serious car crash I have had 3 major operations ..when I was in my 20s and very fit I had an episode of ..UC.. so I was told.. I never got a firm diagnosis because back then in the 1980s test were not very accurate and I was treated with asacol pills and foam .after some PR bleeding and not feeling well and going to the loo many time a day the consultants decided it ]was UC then as soon as it arrived it went and many years on it became a distant memory until this easter .and I started with severe stomach pain .then my world was thrown into chaos I spend time in hospital with pain and all I was treated with was morphine and shown the door .this went on for three weeks until my doctor sent me to a colorectal consultant ..since then I have had CTVC and MRI with contrast {yuk] and all they could get from that was mesenteric ????? sorry carnt remember the other bit .but I received a letter today telling me that I now need a whole body MRI scan and they are using 100ml of my blood and marking it with nuclear markers to see where the infection is .then the next day I am having a bone density test.this is all very new and strange to me in the old days you got a colonoscopy and that was it .so far the general consensus is I have CD .I am 47 and due to 17 years of narcotic use for pain .I am always tired .and spending time away from my house is very traumatic for me I struggle to get comfy on anything other than my recliner ..I know it must be awful for a health person to get UC/CD but when you are already ill its a daunting prospect{tests and the prospect of having another life long disease.first is there anyone on here with a similar background to myself and if not does anyone know about the MRI test and what it all means .I am out of date regarding test ..its been a very upsetting time for me and my wife .we can just cope with my back problem and then to get another problem is going to be hell .my consultant is giving nothing away and he want to get all the test done before he tells me my destiny at the moment I don't know if I have cancer or IBD or anything in between .its driving me mad ..I am very tired and its all I can do to stay away ,I spend most of my days flopped out on my recliner in pain .and that's about my life I carnt even swim as I am so ill ..I am just waiting for the results .so ikts next Monday when I have my test then I will have to wait for the results ..I may sound selfish but I don't want another illness I have enough with my back ..its one of the worst backs my consultant has ever seen .and that has taken so much away from me as it is .I carnt belive that I have another illness .its so unfair .
STRAKER
07-01-2013, 04:26 PM   #13
charlottevet
 
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this is all strange to me ..as I have mentioned I .for the last 17 years have been wrapped up with spinal problems following a serious car crash I have had 3 major operations ..when I was in my 20s and very fit I had an episode of ..UC.. so I was told.. I never got a firm diagnosis because back then in the 1980s test were not very accurate and I was treated with asacol pills and foam .after some PR bleeding and not feeling well and going to the loo many time a day the consultants decided it ]was UC then as soon as it arrived it went and many years on it became a distant memory until this easter .and I started with severe stomach pain .then my world was thrown into chaos I spend time in hospital with pain and all I was treated with was morphine and shown the door .this went on for three weeks until my doctor sent me to a colorectal consultant ..since then I have had CTVC and MRI with contrast {yuk] and all they could get from that was mesenteric ????? sorry carnt remember the other bit .but I received a letter today telling me that I now need a whole body MRI scan and they are using 100ml of my blood and marking it with nuclear markers to see where the infection is .then the next day I am having a bone density test.this is all very new and strange to me in the old days you got a colonoscopy and that was it .so far the general consensus is I have CD .I am 47 and due to 17 years of narcotic use for pain .I am always tired .and spending time away from my house is very traumatic for me I struggle to get comfy on anything other than my recliner ..I know it must be awful for a health person to get UC/CD but when you are already ill its a daunting prospect{tests and the prospect of having another life long disease.first is there anyone on here with a similar background to myself and if not does anyone know about the MRI test and what it all means .I am out of date regarding test ..its been a very upsetting time for me and my wife .we can just cope with my back problem and then to get another problem is going to be hell .my consultant is giving nothing away and he want to get all the test done before he tells me my destiny at the moment I don't know if I have cancer or IBD or anything in between .its driving me mad ..I am very tired and its all I can do to stay away ,I spend most of my days flopped out on my recliner in pain .and that's about my life I carnt even swim as I am so ill ..I am just waiting for the results .so ikts next Monday when I have my test then I will have to wait for the results ..I may sound selfish but I don't want another illness I have enough with my back ..its one of the worst backs my consultant has ever seen .and that has taken so much away from me as it is .I carnt belive that I have another illness .its so unfair .
STRAKER

Im soo sorry to hear about all you have been through, it must be terrible for you! However, im sure the hospital will do the best they can and eventually you will feel much better than you do now. I just hope they are quicker with you than they have been with me. Hope you feel better soon

xxx
07-02-2013, 08:33 AM   #14
UnXmas
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Hi All. I rang them up today, and apparently on the system it says my gp should already have the letter?! So i told them i had seen my GP on friday and that wasn't the case. she then went "huh....erm.... I'll check whats going on..... oh, they may still be at on Dr X's desk waiting to be signed off then... im not the usual sec as shes off at the moment, i will leave a message for her to chase them up and check things when she get back. Hopefully you should hear SHORTLY" - sigh soooo goodness knows what that means, probably another 2 weeks wait to tell me they haven't found anything I suppose :\

Im sorry to rant guys, it's just been a year and everything feels like its going no where... Im so worried I'll never be ell again and I'll fall behind everyone... never be well enough to meet anyone new, never get married or have kids, just be that sick girl whos a hermit at home
One really important thing I learned when I was trying to get diagnosed is not to put life on hold. So many times I was thinking I just had to wait until my appointment with the specialist, or I just had to wait until my test results came back. Unfortunately we don't always get answers, and this doesn't stop even when you do get diagnosed - it's quite possible to then find yourself just waiting for your next appointment or just waiting for the next treatment to work.

It's terribly difficult to do, but if you can accept that you might never be well again, then you might find yourself better off than now when you're continuously longing to be healthy. You may have some limitations because of your illness, but there are a lot of things that you can do whilst having Crohn's - or whatever your illness turns out to be. You can see from people on this forum that many people have families, boyfriends, careers, etc. despite having Crohn's, and not just the ones who are in remission.

If this MRI shows nothing, keep going to your doctors to try to find the cause of your illness but don't make it the main focus of your life. Maybe see if your doctor will try to work on symptom management without a diagnosis. But don't put your life on hold.
07-02-2013, 09:01 AM   #15
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with having intractable spinal pain for many years .my body is ;;frail;;for a 47 year old I sleep for maybe an hour the back pain wakes me .its been this was for over ten years I have had 3 spinal surgeries and the last one almost killed me that was 18 months ago .my recovery is very slow and I am now very limited in what I can and cart do .I carnt even wear ;;normal ;;clothing due to permanent nerve damage in my legs I have to wear baggy shorts all the time .I carnt even wear normal shoes .its either slippers or crocs for the same reason .I have no social life [due to pain and being tired all the time and not being able to wear normal clothing ..so things like family functions are a NO NO .imagine going to a wedding in shorts and crocs ! and then I carnt get comfy on anything other than my recliner and I need medication round the clock ..and that's before I start on this new problem !! so you see its not
going to be easy .if half kills me just going to the hospital for tests I canrt stand it .I just hope its not as bad as I think because I don't know how I will cope lifes a battle at the best of times .having CD or UC is bad enough when you're otherwise healthy but when your body is battered with intractable pain its a whole new ball game .I have no energy and I carnt cope with stress ..the next few weeks are going to be hell like the last few have ....when I started with back problems I was all guns blazing and I will get through this blar blar blar ..try 17 years of that and its now ..more like OMG another day of pain and hell throw UC/CD or cancer in to the mix and its more like why me
07-02-2013, 12:55 PM   #16
723crossroads
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thanks for the reply. In a way i was hoping the MRI would have shown something as im still as sick as a dog.... if it comes back all fine god knows whats wrong with me, I might never get better
Even Mri's don't show everything or catscans. You can have inflammation that is microscopic. I too had this happen.
07-04-2013, 06:00 AM   #17
CeeCeeGo
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Hello Charlottevet

In 2012 I had a MRI and got the results within a week when I met with my consultant. Bearing in mind also that just after the test the technician said that the images they had captured were fine (in terms of being sent to the consultant). They did show signs of Crohns and thickening of the terminal ileum but I only found this out when I met with my consultant.

Therefore, from the above, I assume that the results were immediately available and should be able to be viewed immediately by the consultant. I would ring/email your consultant/secretary and ask why it is taking so long to get the results and ask for copies of any letters sent to your GP.

I have a good relationship with my consultant's secretary and it has proved to be a godsend as I am able to get appointments quickly and also can get to speak/email my consultant to get questions answered quickly without having to go in to see him.

Take care and I hope you get your results soon. 😎
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07-04-2013, 07:10 AM   #18
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hi guy and girls .I am new to this ..is it normal to be absolutely shattered I have no energy at all I feels SO i'll its untrue also I must be having a flare up as I have got horrible abdominal pain all I want to do is sleep .I can't believe this is happening to me .I know that sound a bit selfish but years of back problems then this ..the word I was looking from is MESENTERIC LYMPHADENOPATHY anyone know the implications of that ..as you can see I am a novice and frantically scratching around for answers .however I am an expert patient when it comes to spines thenks for yopur support and hope
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07-04-2013, 07:49 AM   #19
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Thanks you all so much for the replies, I guess its just a wait and see sorta thing fingers crossed the hurry up!! I rang the lady up today (secretary) and she was less than helpful! Apparently she isnt sure were in the system my result are, and that I might not hear back till mid August.... urgh, but hey, patience is a virtue
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