Forum

symptoms flaring up again

About 3 years ago I suffered numerous weird neuro symptoms. I was referred to a consultant and had mri, and was told the problems I was experiencing were down to migraines.

The symptoms persisted for a further couple of years before gradually dwindling away, hoorah!

However in recent weeks I have noticed I am getting clumsy again and feel so very tired. On Friday my vision was darker than normal in both eyes, a bit like looking through tinted glasses. I also have odd blurry patches in my eyes. The double vision I usually have has got worse too. I keep getting strange weak feelings in my arms (as if they have been bent awkwardly) and today my legs feel heavy as if I have walked for miles. I also get random headaches, intense but shortlived.

Is it worth another trip to gp or just keep a diary in the hope it all goes away?

Hi,

I think you do need to go back to the doctor.

It doesn’t sound excessive or paranoid to me, if, as your post suggests, you haven’t been about this matter for at least a year, and possibly almost three!

Even if it IS migraine - which is possible, and I hope that’s all - if it’s not being controlled successfully, and indeed is getting worse, I think it needs a more proactive approach than keeping a diary, and hoping it goes away.

What would you be keeping the diary for anyway, unless you plan to go to the doctor’s with it one day? So if you anticipate going to the doctor eventually, why delay? You’ve already been suffering for a few weeks. How much diary evidence would you consider you need, before it’s reasonable to go to the doctor’s?

I think a few weeks is sufficient - and I’m sure explaining it much as you have here would be enough, without having to present a detailed log of dates and times. Appointments are too short for them to wade through a detailed diary anyway. You just need to capture the main points - preferably in order of severity (you don’t want to keep any really big ones 'til last, in case you forget, or run out of time), and approximate frequency or timescales. Also anything you’ve noted that makes it better or worse.

That should be it, really - scrub the diary (just my opinion).

Tina

Hello and welcome :slight_smile:

I’m with Tina: it sounds like it’s either not migraine or that whatever preventative med you’re on isn’t working any more. Either way, you need to see your GP.

Hopefully a change of meds will sort it out, but I think I’d want to see a headache specialist neuro to be sure there isn’t anything else going on and to make sure I’m on the right meds, if I were you.

Karen x

Thanks for your quick replies.

I am reluctant to go back to Dr after so many appointments last time round which were inconclusive. I think like a lot of others I ended up questioning myself as to how much of this was brought on by anxiety. Before my eyes went peculiar on Friday I was only just thinking to myself how well life was going, so I don’t think it is stress. Also, I don’t believe it is migraines. I am not on any medication apart from a very occasional paracetemol.

There is also the issue of work. I work part time in a fairly demanding job. They were understanding last time but as the months went on and I still wasn’t right I had the comment “we are in danger of this becoming a lifestyle choice” from one line manager! I can’t imagine many people choosing this as a lifestyle!

At the moment things aren’t as bad as they were last time. I am hoping if I leave it and try not to dwell on it too much, it will go away. Difficult when eyesight is involved though.

Sorry for rambling.

Please don’t underestimate how devastating migraine can be, even in the absence of headache. Some people are unlucky enough to get bouts of serious, unremitting neurological symptoms for days or even weeks, sometimes with a typical migraine headache the whole time, sometimes with headaches that come and go and sometimes with no headache at all.

So my advice would be to see your GP to ask for a migraine preventative med. They say it’s migraine? Then call their bluff: ask for treatment. If it is migraine, then finding a pill that works could solve all your problems. But if migraine meds don’t work, then you are definitely owed further investigation.

Kx

Well i followed your advice and went to GP. I explained the circumstances much as I did above and she seems to be quite mystified. Her words: “Well we know it’s not MS because the consultant told us it’s not MS but it is like MS”. When I reminded her the consultant had said it was migraine, she said “Oh no it’s definitely not migraine”. (Incidentally, I do not underestimate the problems caused by migraines, sorry if I gave that impression. My mum suffered badly with them for years so I know how awful they can be).

She has suggested that if my eyes have not improved in a week or two then it might be worth going to see opthalmic consultant so that is where we are.

This all sounds very odd.

Might be worth asking to see your notes, because what you’ve been told and what your doctor seems to have on file seem contradictory.

I can’t imagine any consultant, having told the patient it’s migraine, would then write to their GP saying it’s “like MS, but not”. Surely, if the diagnosis were migraine, he’d say that quite unambiguously, and not waffle on about something that is “like MS”?

It could be worth pressing to see the consultant again, or requesting a second opinion, as it’s now unclear what the verdict was last time. It doesn’t seem to be as you have always thought.

Tina

x

go back to the gp.hopefully they will be helpful.tx

Oops I think it may have been my post that was confusing rather than the consultant!

Consultant said after mri scan 3 yrs ago “I think we can safely rule out ms” and he put my probs down to migraine.

GP said yesterday that because consultant said 3 yrs ago it wasn’t ms, then it wasn’t ms. However she disagreed with the diagnosis of migraine given by consultant.

marimoo, I am sure you have read many posts on here where the medical proffesion state quite clearly it is not ms, as they did with me almost 20 years ago, and I was eventually diagnosed in September last year. OK, he said to you 3 years ago it isn’t ms, which it may not be, great, but something is clearly troubling you. I supose what I am trying to say is don’t doubt yourself so much, you know you are not right so keep at it. Funilly enough I have had a similar conversation with my wife today, I need to drop a MRI scan I have had recently with my Neourologist and have a new MRI scheduled for the end of June. She said after my scheduled scan I need to track down the Neurologists secretary and hand her the scan, my wife, who worked in the NHS for a long time as a nurse said that the NHS is not a place to be shy, if you don’t make it happen, it probably won’t happen. So don’t give up too easily. Good luck with everything.

What a muddle! How confusing for you :frowning: I’m not sure what good waiting one or two weeks will be - surely it would be better to see an ophthalmologist now, when the problem is active, than wait and see if it gets better? Apart from anything, if it gets better and leaves no evidence, how will you know what was wrong? As others have said, the fact that the consultant said it wasn’t MS three years ago doesn’t mean that a consultant would say the same now - evidence changes over time, and sometimes MS is slow to show on MRI. I didn’t mean to sound like I was reprimanding you in some way about migraine: really sorry if it came across that way. Kx