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Lesions/MRI, Symptoms list and Ambivalence over diagnosis..

Hi again all,

I have a couple of questions and a thought - grateful for any advice!

1 - Do the lesions disappear when symptoms improve? I’m asking because I’ve got my first neuro appointment in December and can feel that things have improved over the last couple of months… so I’m wondering if, if things carry on improving, there’d be no lesions to be seen by the time I get to MRI stage? Also I’ve got very fast reflexes and the babinski test has shown things are wrong - do these change when symptoms are less? Just so I can be prepared (and hoping the symptoms will carry on lessening - we’ll see…)

2 - People have mentioned symptom lists/diaries and I’ve done one but it’s a very rough overview as I don’t want to be focussing on the symptoms every day, but trying to forget about it and focussing on positives… I’m sure there are posts on here about the best way to do a symptoms diary/list for the neuro but I haven’t been able to find them, so any advice on the best way to structure it welcome here!

And my thought - I’m very much in limbo at the moment as far as diagnosis goes, but am really not minding that much, as I really don’t want to have to tell DVLA/insurance/holiday insurance/potential employers etc. about it. I’ve got support from my partner and others, who know the situation, and am working on living more healthily, stopping smoking (tough one - not there yet), taking vitamins etc., and can always go to my GP if things get really bad, who I know will try to speed things up (finally got a good one!) if needed, and will work on treating symptoms in the meantime. I don’t know if that helps anyone, or if it’s just a bit strange, but thought I’d put it out there.

Thanks all,

x

Hi Blue Sky,

Saw nobody had replied yet, so thought I’d give it a go.

Yes, lesions can/do fade as they heal, but not usually to the point of becoming completely invisible. In effect, they leave scarring, which should still be visible - especially if the scarring is still quite recent. Assuming you did/do have lesions, I don’t think just a few months wait will be sufficient to erase all evidence. You may have less pronounced abnormality on neurological examination, if you have made a good recovery since the onset of symptoms, although it’s likely there will still be something. I had a “near normal” exam, but one abnormal finding was that I couldn’t feel vibration in my ankles. As this isn’t a faculty you’re very conscious of, in everyday life, I hadn’t even noticed it was gone! So even if you’ve made a good recovery, sometimes quite subtle abnormalities persist.

I’m completely with you on the symptom diary thing - it’s not something I’ve ever done or found useful. I don’t want to be actively looking for symptoms, and recording them down to the finest detail. I know about the “big” things - and approximate timescale - without having to keep a diary. Exact times and dates aren’t necessary. Approximations like: “last Summer” and “then again about Christmas” are fine. I found I was able to date things roughly with reference to other events in my life, such as: “It must have been about my birthday”, or: “Not long after Dad died”. If you itemise every symptom, however minor, with a complete list of dates and times, they are not going to read it all anyway. It will get shoved in your file, and probably never referred to again. Broad picture is fine: What? When? How often? For how long? (Days? Weeks?)

I can also relate to the ambivalence around diagnosis, although not quite for the same reasons. When the time came that I was finally being investigated for MS, I considered I’d already been ill for some years. So I didn’t have the same sense of urgency some people have. “Early diagnosis” was a bit redundant, in my case. What difference does it make, if you suspect you’ve already had it ten years or more? So I wasn’t that desperate to stick a label on what had already been going on for years anyway - although I did have at least one good reason for being diagnosed - critical illness insurance!

Re telling DVLA, that didn’t affect me, as I’m a non-driver. But I gather all that usually happens is your licence is replaced with a 3-year one. An MS diagnosis in itself isn’t reason to withdraw somebody’s licence, but it would depend on the exact symptoms. Obviously, if you had severe visual impairment, or couldn’t operate the controls or something, they’d want confirmation these symptoms had resolved, before you’d be allowed back on the road. But really, that’s just common sense. If you knew you were that severely impaired, it would be suicidally irresponsible to get behind the wheel anyway. Why would you want to chance it?

Holiday insurance - OK, it does cost a bit more, but not hugely so, in my experience so far - and worth it, for the peace of mind that if you do take a turn for the worse on holiday, it’s going to be covered. Even without a firm diagnosis, it may be worth considering disclosing neurological symptoms, and paying the extra, to ensure they are covered. Otherwise, if you have a flare-up while you’re away, and it turns out you were already being investigated, they may say it’s NOT covered, as you hadn’t disclosed.

You don’t have to tell potential employers in any event. There may be some limited exceptions, such as if you wanted to be an airline pilot or to join the army - I would imagine there has to be full medical disclosure for those. But for the vast majority of jobs, you do not have to disclose, and they are not even allowed to ask. Of course, you have to take each case on its merits. If they were asking for someone with awareness of chronic illness, or “disability issues”, for example, it might be a plus-point to say you have MS. Some employers also have a policy of proactively trying to recruit from “under-represented” groups. So again, if it looks as if it might help the application, could be good reason to tell.

Tina

x

I had a symptom list but it was only rough dates with symptoms and I didn’t really need it during the examination but was more useful to have in my own mind before hand. Axx

Thanks both - really helpful :slight_smile:

x