GP concerned

New diagnosis and before diagnosis
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Hello all! I’m new to this forum, although I’ve found it a real help looking through previous posts. I’m a 32 year old female, going through the pain of waiting for an MRI so am venting here! Hope you don’t mind…

I went to the GP yesterday and have been referred to a neurologist for an MRI due to suspected MS symptoms. A few months ago, my pinky finger on my right hand went sort of numb for a few weeks (I would bite my left finger to compare the feeling to my right to make sure I wasn’t going do-lally lol). I also had mild tingling in my right foot and right hand. I didn’t think much of it at the time as seemed like a small thing. I also had mild blurred vision and a few dizzy spells (vertigo-like spinning) over the course of a few weeks but I was coming off the mini pill and had a cold so chalked them down to that.

I went on holiday last month and my boyfriend and I travelled overnight to get to our destination so I didn’t get any sleep. We had a few hours kip on the beach the next day waiting for our apartment to be ready for check in. By the evening I was hot and tired. I was watching the sunset when the waves in the sea started to blur and sparkle in my right eye. I’ve had migraines with aura a couple of times before. Although this one was a bit different to my usual - I had blind spots and small flashes rather than my usual “classic” aura crescent and colours - I quickly figured it must be another migraine. I went for a lie down, a bit confused but hoping I could sleep the upcoming headache off.

But instead I got quite disorientated, stood up and felt agitated with tingling starting in my right arm and leg and spreading to my face and mouth and felt numb. I tried to speak. In my head I was trying to say to my poor, worried boyfriend “I’m not sure if it is a migraine”, but the words that came out were all incoherent - I just kept repeating the word “eyebrow” and gobbledygook! Within 30 minutes the episode finished and I started to get a throbbing headache. I was relieved that it didn’t seem to be a stroke but actually a very, very bad migraine episode. However the tingling sensation in my right hand and foot was quite pronounced and continued on and off for the next few weeks (still have it mildly and intermittently now) and as soon as I got back I booked in with my GP to make sure everything was OK.

I thought that MS would be a potential area of focus as my sister has relapsing-remitting MS. However, I also knew there were/are lots of other possibilities, such as migraine-related issues. However, I was pretty shocked that my GP was very concerned straight off the bat, part of me thought it would all be chalked up to something small and I’d be on my way, even though there were obviously neurological symptoms. I went through my symptoms, the episode on holiday and I had some short sight/feel tests (which seemed to go ok).

My GP was pretty much singularly suspicious of MS and has sent an urgent referral letter to neurology for a brain scan (which I still suspect I will have to wait quite a while for, as I live in an oversubscribed London borough). I was advised to make another appointment with him to talk through what MS is, my concerns etc. I’m pretty shaken by how seriously he took it, and how focussed on it being suspected MS, although obviously grateful for his concern and thoroughness. I don’t think this is usual?

Sorry for the long post, I’m still a bit shocked and processing the information. For those of you who have been through this process, how did you cope with the waiting part? I don’t want to put my life on hold, but at the moment it is hard to focus on other things.

1 Like
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Hi there Yazoo,

The first thing is to say that the waiting part can go on for a long time and can be very frustrating. I’m not sure I can give much advice as I don’t think I coped/am coping (still don’t have a dx for what sort of MS I have) very well.

Your post is interesting though as I also suffer from migraines and have had variations on a theme over the years. I had a phase of having ones like you mention which affected my speech, (I kept trying to say ‘I’m having a migraine’ but what I did say was ‘can I have some orange juice’ or something irrelevant and confusing) I’ve had one where everyone’s noses disappeared and others when I didn’t recognise my own body as my own and kept slapping my hand off my leg. I’ve often wondered if these odd migraines were actually TIAs, my usual migraine is missing vision, broken mirror, throbbing head pain, followed by dizziness & vertigo for up to three weeks.

Anyway, I wasn’t aware that migraine can show up on MRIs as spots, and so was very frustrated by my MRI results this year because my brain results were not typical of MS even though there were spots there, it was decided these could be the result of my migraines (I have a lesion on my spine as well though) so then I had to wait for Lumbar Puncture which does indicate MS and now I am waiting for an MS specialist appt.

It’s good that your GP is on the ball, even if the MRI is clear or migrainey it’s worthwhile because it means you have a base line for the future. Oh and about Saturday hospital appts: I got totally freaked out recently by a breast clinic appt that came through days after my GP visit and was on a Saturday. I was sure my GP must have felt something really bad - turned out Saturday is routine now.

Let us know how you get on

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Thanks very much for your thoughtful response, Teal. I hope everything becomes a bit clearer for you after your upcoming appointment.

Yeah, the migraine threw me as it was the first one that wasn’t the “classic” aura type. With the speech and other disturbances, they do seem to bear a lot of similarities to strokes. The doc did take my blood pressure which was fine. I read somewhere that migraines and strokes can leave similar scarring on the brain too - so sometimes people are told they have had a stroke at some point in their life after an Mri but it could have been migraines (and vice versa). It also seems that there is a much greater prevalence of migraines in MS sufferers than the general population, but not sure what the link may be (or if there is a definite link - obviously there are a lot of migraine sufferers without MS).

Guess I just have to wait and see what happens!

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Just wondering if you have had your Vit D3 checked?

I don’t know of any science to back this, but I found out this year that my Vit D3 was severely low. I then found out that Vit D 3 levels are lowest in spring, and my worst migraines are always in spring. I’d begun to associate them with bright windy weather and possibly air pressure, but now I wonder about the D3 levels.

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Nope, haven’t had D3 checked but will look into it, thanks! I have only had 3 aura migraines in my life but they have been humdingers so it will be interesting to see if they have left lesions. I’m not sure there is a pattern to what has triggered them other than possibly tiredness/stress. My neurology appt has been confirmed for 30 December (happy xmas!), so a long wait…

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… And tonight my right eye is weirdly irritated, a mild sting like it has something in it or is sleep deprived. I’m now paranoid it is related to my other symptoms although it could really be anything. Need to try and get my mind off it!

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OK, well you might want to consider keeping a symptom diary between now and your appointment. Some people find doing that heightens their anxiety, but for me it helped me, mind you, when I started doing it, I already knew I had a lesion on my spinal cord so was very ill and very worried.

The eye pain sounds, as the neuros say, very non specific. I had gritty blurred vision which turned out to be dry eyes and easily alleviated by over the counter eye drops. It’s also exacerbated by staring at computer screens, which I was doing a lot as I researched everything and anything to do with symptoms and treatment.

One thing you could do if you want to do something helpful between now and your neuro appointment is start practising mindfulness. We know that it helps physically as well as mentally and definitely helps me cope better with the whole diagnosis journey. I bought the Mindfulness for Health audio book, but there are lots of free examples out there on the Internet. I wish I had realised what it was about years ago, I find it is deeply relaxing, and you really don’t have to believe it will work, you just do it and it does!

Take care and keep us updated

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Thanks very much, Teal! You have been very helpful and provided some great advice :slight_smile:

I am an over-thinker anyway, so mindfulness would probably help me in more ways than one! It is also something positive to google for once! Regarding the eye, I’ll try not to think about it as it could be anything. I’m keeping a note of my concrete symptoms on my iPhone as otherwise my memory would definitely fail me. I’ll keep you updated and thanks again for your help!

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I am supposedly an over thinker too, although now I prefer to say I am just a ‘thinker’ :wink:

Please do continue to post, I’ll try to not to answer with too many ‘solutions’ and maybe someone else will join in too.

Sometimes it is important just to put your thoughts down in writing to someone else, really helps when you have that precious 20 mins with the neuro if you have already worked through explaining how your symptoms feel and their history.