Hi,
So starting October 2023, I rang my GP after getting really bad headaches, noted I had previous tingling in hands and legs/feet. Also the left side of my face went numb on two different occasions. So they suspected MS or brain cancer so I was sent for an urgent MRI, few days later a lumbar puncture then seen a neurologist who told me I had some inflammation on my brain and lesions. Have since had EVOKE POTENTIALS, blood tests more MRI’s. Was told they wasn’t thinking it to be MS as no active lesions, my last MRI was September 2024.
So a few days ago I received a letter from the hospital saying they need to monitor the white matter lesions from my last MRI,… and that if I have any queries to contact my specialised MS nurse!
Does this mean they have diagnosed me with MS? only my head is all over the place with confusion after being told it’s not likely to be MS to then recieving this letter.
Can anyone help or have had a similar situation?
I have tried to contact the MS team numbers they provided but I get no answer even after leaving a voicemail to return my call. I also contacted my GP who was also surprised as they had no diagnosis on file or a copy of the letter.
Really don’t know but I suppose that the diagnosis might be one of possible MS and a need to monitor you. I think that diagnosis requires ‘lesions separated in space and time’ ( the so called McDonald criteria). So maybe at this point they can’t say ‘separate in time’.
Others might have better insights
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Yeah I haven’t had a conversation with my neurologist for about 8months, and since then I’ve had the MRI in September and more blood tests but iv not been updated as to what they suspect. I did end up in A&E before Christmas and they spoke with my neurologist and it was mentioned that it’s possible I have SFN… but nothing was discussed about MS.
It’s all just become very confusing, I always knew it will be a long road to diagnosis…. but I would just like to be kept in the loop you know.
Thank you for your reply
Really rubbish communication from the hospital.
Can you get hold of your neurologist, perhaps through his/her secretary? I know consultant’s secretaries tend not to answer phones/email, but it’s a very fair question to ask.
In the early days, I went through various MRI scans. There were white matter lesions that they wanted to monitor over time. I think it’s often unclear what these lesions are, so they MRI repeatedly to watch for any changes. On the basis of my lumbar puncture results, they told me I had “radiologically isolated syndrome” - i.e. the scan looked like MS but I had no symptoms.
Unfortunately, I then did get symptoms so the diagnosis was switched to MS.
Not all RIS cases turn into MS.
But some neurologists seem to refer to it as a kind of “potential” MS - in fact, I was told I might be eligible for treatment for the RIS itself, to try to stop it turning into MS (early treatment is better, generally). So I wonder if that is what has happened. They may have thought the MS nurses would be a good port of call in case you were worried about MS… though of course if they don’t reply, that’s not helpful!
Yeah well iv had so many symptoms, still get many of these…. pins and needles, numbness, blurred vision, muscle twitches, popping sensations on my scalp… pain in my joints, ankles, hips and wrists mainly.
I also went to opticians and was told it looks like I have retrobulbar optic neuritis, which I’v been waiting for nearly a year to be seen by ophthalmology.
I have tried contacting neurologists secretary but can’t get through and have no reply. I’m going to my gp today to show them the letter.
Hopefully get some clearer answers soon