Hi
Today a neurologist told me that from looking at my brain MRI scan he believes I “definitely do have a demyleinating disease,” and that it is either “mild MS” or “MS-like”… I have been referred to MS team.
This is obviously worrying, but what was most upsetting was how demeaned I felt by the whole experience. When I first saw him months ago, we spent a lot of time discussing the fact that I have OCD and depression; he had said he thought my symptoms were more than likely related to my mental health difficulties; that if I ‘got on top’ of my mental health the rest would follow. He said at the time that he thought it was unlikely to be MS, but would do an MRI 'to be safe / put my mind at rest". At the time I felt that he made it clear that he felt my symtoms were anxiety based; this was the main reason I delayed the MRI scan, I felt a bit ‘silly’ about it all.
Anyway, MRI has shown enough for him to refer me to MS team : he said it is 'definitely a demylinating disease": ‘mild MS or MS-like’.
BUT… his approach to it all made me cry. I feel awful, really really embarassed by the whole thing. When I went in I thought I might be able to discuss my physical difficulties in the light of mri results (at my previous appointment he had refused to discuss my concerns about MS symptoms; he said “if you try hard enough you can make anything fit”, ) but even today I felt like he was still dismissing my symptoms. . in my opinion, he seemed much more keen to make sure we discussed my mental-health issues than the MS. Which is silly, I already see a psychiatrist… I don’t need 2 of them! And he wasn’t very skilled at discussing mental health, just quite focused on it. I think he was trying to say, “yes, there is some MS here, but you are prone to worry, so try to keep it in perspective”, but actually, it came across as ', you’re overeacting because you have mental health problems… stop making a fuss "
I tried to discuss symptoms in my leg, but he said he really didn’t think my leg issues were related to the marks on MRI (which I dont understand, as the leg issue was one of the reasons the scan was done in the first place). He said my symptoms were ‘mild sensory’, so good prognosis (and I quote … “I would only be worried if something dramatic had happened, like incontinence” (although actually I have had a few episodes of incontinence last year, and have discussed it with him previously), so this just made me feel annoyed. I mentioned that another doctor had suggested gabapentin for pain, he said ‘its up to you’. He said if I was his nearest and dearest he might want to have me assessed to see if I was suitable for DMDs to avoid potential problems later on, but that he’s not an expert in MS,
I asked if I would need more tests (the only actual tests he has done was to hammer my leg reflexes last year, and the brain MRI that showed demyeination) . I asked if they would need to MRI my spine, he said categorically “no point”; I asked ‘why’, he said “because my physical exam of you was fine, there will not be anything to see on your spine”.
I asked when the referal to MS team would be made, he said it would a few weeks, there is no need to hurry because I have a very mild form of the disease’… although this is reassuring, I do feel that telling a newly diagnosed person 'not to worry, you will be fine," is maybe less helpful than saying, “it’s normal to feel worried”. At the end he said that he hoped he had ‘cleared things up for me’… but I still dont feel very sure about any of it (although he did admit he wasnt sure either, he kept saying MS wasnt his speciality, he specialises in Parkinsons)
I am quite worried about seeing MS team… don’t think I can cope with another appointment like that. I have been quite upset this afternoon, not so much because of the MS stuff (I had exected that as had spoken with gp about initial mri result), but more because of how the appointment made me feel… as though having mental health difficulties is shameful, and that since the ms is mild I am making a fuss.
Also, I nearly missed the appointment because the neurology receptionist sent me to the wrong waiting area (I was there for over an hour, waiting in the wrong room)… so I was initially put down as a non-arrival, and was told I was ‘lucky’ he had managed to fit me in.
Feeling very agitated about the whole experience.