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)?