Should I attend this appointment or cancel it?

New diagnosis and before diagnosis
1

Hi everyone, I have been on the forum a few years ago, but have not been on for ages, just trying to get on with life! I have ended up with another Neuro appointment and am unsure whether to attend or not or if I will just be wasting mine and the Neuro’ time.

Briefly, to summarise, I have been ill for years, I started in around 2005 with fatigue, dizziness, , this progressed over the years to visual disturbances, double vision, tingling in face, tongue, mouth, slight numb patch on leg, creeping flesh sensations, sore skin that feels sunburned, aching limbs, muscle weakness and absolutely no energy at all.

I am now 48, female, non-smoker, slightly overweight

My diagnosis is fibromyalgia but i had a brain MRI around 4 or 5 years ago that showed high signal areas in the white matter of brain. Report said “not entirely typical for demyelination, not entirely typical for small vessel disease”

Lumbar puncture and VEPs following this were NORMAL

I have had numerous blood tests, was vitamin D deficient but am not now after supplements which I still take, I am on vitamin B12 injections, have been on those for years.

At the time of the MRI, the Neuro said nothing to suggest MS so I have tended to shove it all to the back of my mind, thinking it is all caused by fibromyalgia which I was diagnosed with in 2014. I take Gabapentin every day which has really helped with all the paraesthesias. I have carried on with life and am now working part time. I still get very fatigued and have now got arthritis. oh the joys of ageing!

Fast forward to now, in September I started with a twitching lower eyelid, it started intermittently, I didnt think anything about if, but then it started continuously for WEEKs, its drove me crazy and was very embarrassing as it was very obvious. As it lasted so long, I spoke to my GP about it, I had a load of blood tests and these were all normal, even tested for magnesium, all ok. GP said because of what had gone on before and the MRI result, would write to Neuro and ask their advice and if this was something that was ok to ignore, anyway an appointment came through to see a different Neuro than the one that I saw before, the appointment is for this week. The twitching eyelid lasted for a number of weeks and is now still there but only very intermittently and is hardly noticable compared to before so I was going to cancel the appointment but for the last 3-4 weeks, I now have the tingling tongue back again, but only down the left side of the tongue. arrgh!

So folks, should I go to this appointment or would you cancel it? I dont want to waste anyone’s time and the hospital is a long way from where I live. would you be worried about the blepharospasm (think thats what GP put down)?

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Hi Pinkcat

I would not cancel your appointment, they are hard to get, plus things may have changed and it would reassure you to have the tests and you would be clear of what you have and that you can be treated correctly.

If you don’t you would be still wondering what you have, which I think would drive you potty it would me . I am waiting for my MRI then it’s waiting for April for my neurologist, I still don’t know if I would be diagnosed with ms or something else or that I need more tests, the doctor I had for my lp said that my MRI hopefully will be in March and it’s only the end of January.

I hope things go well for you. Kay

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Hello

I think if your GP thinks it’s important enough to refer to Neurology, and the neurologist is happy to see you, then go to the appointment.

It is entirely possible that your previous MRI and other tests didn’t make the neurologist think MS was likely and still don’t, but it’s also possible that the eye spasms are in fact caused by MS.

About 80 to 95% of people with MS have positive LPs (+ for Oligoclonal bands in their CSF), but that means there are a number of people with MS without O bands.

This doesn’t mean it is MS, or that it’s even likely, but it could be something else neurological that’s not quite right. And you’ll never know if you don’t go to the appointment.

All the best.

Sue

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Thanks for the replies, I just feel such a fraud as the he wont even see the twitching that was so obvious for weeks before Christmas. wish I had taken a video of it now! I will have a think about what to do.

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Hi PC, you are not a fraud, if your GP felt it significant enough then you see the neuro.

There is nothing to think about you go explain, and see what the neuro says ok.

good luck. xx

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You can at least explain what’s been happening to you. And don’t forget, on the referral your GP will have detailed their reasons for the referral.

Sue

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UPDATE

Thanks everyone for your wise words, I did go to my appointment. I am to have another MRI to see if there have been any changes since the last one, (2015) and Neurologist said he would see me after the scan so will see what if anything it shows.

Also since my last scan, I had an episode of severe dizziness and balance problems that lasted for a few months, not sure if this was related or if it was an inner ear thing. I am a bit better now but not completely back to normal, I have to be careful not to turn around too fast or stand on ladder, etc.

Anyway, will have to wait for an appointment now for the scan. I am glad that I went now as at least it would put my mind at rest if the scan is the same as the last one

x

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