@srh90 

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srh90

Incorrect MRI results.

Hi everyone - this is a bit of a sensitive one, but hoping to get people's views on what to do, or if anyone has experienced something similar. My last MRI was in November 2022 and the results were reported as stable compared to previous years since having treatment (Cladribine) in 2018 and 2019. I recently had some pain in my leg, which was feeling a bit like sciatica, but possibly tight leg muscles due to MS. So I contacted my MS team to get some advice and see if there was any medication that might help. I was then offered an appointment to be reviewed by the consultant and to have a neurological exam again. When I attended the appointment on the day, I had the neurological exam and was told that everything was within the normal range and the consultant said that if he didn't know I had MS he would assume I was perfectly fine. Within the same appointment he dropped the ABSOLUTE bombshell, that although my last scan in November was reported as stable, they had reviewed it in further detail to find that I had actually had 2 new areas of MS activity. The consultant explained that they have been essentially 'outsourcing' the job of reviewing MRI scans to an external company, who look at the scans at a certain level of detail i.e. they take slices of the brain scan at certain thicknesses and look for new activity. And also the Drs who do this, are obviously qualified, but perhaps without MS expertise. When my case was discussed at their MDT after I got in touch with the team, the consultants looked at my scan in much more depth and detail "with a fine tooth comb" he said, and lo and behold, new MS activity was found on a scan taken 9 months ago!!!! I had gone to the appointment on my own, completely unprepared for this having believed that my MS had been under control the past 6 years, so it just floored me on the day! However I am feeling increasingly angry and furious that this wasn't found sooner, and that had I not been the one to get in touch, I would never have known! I feel really unable to trust what I'm told and concerned about the accuracy of any future scans. I think my questions are: has this happened to anyone else before? It's the Plymouth MS team, for context. And does it sound unreasonable to place a complaint and speak to PALS about this? The consultant said they are already reporting to their internal incident reporting system and it sounded like it's not an isolated incident. Needless to say I'm having to go through the whole new treatment process again as a result. Any advice or thoughts welcome! x
@syzygi

Wow that's some scary stuff, makes me think about whether my scans are right or they might have missed something. I'm sorry you had to go through that, and yes, you are absolutely allowed to be angry and have some mistrust towards them. If they are already having an internal case on it though, I don't think you making an additional one would to any difference other than maybe feel good for you in the moment? I'm not sure how it works over there though, I'm in a different country and here it would make no diff since there is already an open case on it. I hope some others from the UK can give better advice! If it affected your treatment and could have meant you had gotten better treatment, then it could also be seen as a huge mistake on their end and result in a lawsuit, although I don't think it's super likely. I wish you lots of luck!

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@DawnL

This is very interesting. I had an MRI scan 12 months ago looking for nerve damage and got a provisional diagnosis of MS! Serious shock as it wasn't on my radar as my problem was an old knee injury 11 years ago had never got better. I finally had the diagnosis confirmed 10 months later as PPMS. A second brain scan was taken at this time to assess the current condition with a view to providing a treatment plan. I was told the scans showed little if any progression so I wasn't eligible for treatment so no DMT even though my mobility has significantly worsened so I now need to walk with 2 sticks and have very poor balance with frequent falls! Not great for my mental health! How did you get your second opinion as my consultant never returns my calls?! Thanks Dawn