Hi everyone, I haven’t been diagnosed but wanted to know whether you feel I should except diagnosis or go back to my GP…
I’m 51 so already know most people are diagnosed before this age.
I have had tingling in my feet non stop for 10 weeks. My lower left eyelid has been twitching for 12 weeks! My forehead twitches as too my chin and lips and most areas of my body. I have buzzing/vibrating in different areas which can last for a few seconds to 2 hours. I also have tinnitus but this seems louder now and I has developed into pulsatile tinnitus. Oh and sometimes it feels like I have insects crawling on me!
My GP has suggested I am exhausted and not to worry.
Do I except this or go back? I am also waiting for ENT appointment.
Hi Lexy
If you want an MRI, keep demanding one, or a referral to Neurology if you’ve not had that.
To deny you treatment or a referral is tantamount to medical negligence if it is subsequently proven to be a valid call. Let your GP know that you know what medical negligence is…
Graeme
Hi Graeme, thanks for reply. Think I will contact GP in the morning, amongst other things my right ankle has been buzzing all day and left temple crawling, it’s sooo annoying!
Ive just got a feeling they are not going to take it seriously but hey ho will try my best .
15% of people who are diagnosed are over 55. I was 62 and looking back would not recognize any symptoms before 60. Slightly complicated by putting things down to recovering from a broken metatarsal a few years earlier and to getting older. Mine is definitely Relapsing Remitting as I recovered most of my function after the severe relapse that led to my diagnosis 6 years ago.
Can I ask what your symptoms were? A part of me thinks I’m being paranoid then my face starts twictching and right now I’ve got buzzing in 3 different places. I’m trying to switch off but can’t!!
Thank you for replying I have now been told all my symptoms may be due to B12 deficiency so have to wait 2 weeks before I can even have a blood test!
I’m going to stick at it because I’m fed up of buzzing and twitching
Very clear cut there was something wrong. Basically I could not walk properly and fell over on the way into the GP and on the way out. Sent to Ambulatory Care Unit at local hospital Had MRI X-ray innumerable blood tests and lumbar puncture before being admitted and given iv steroids.
I was diagnosed shortly before I turned 60, after about 18 months of tests. (That was ten years ago). I was then told that there were episodes in my past records suggesting I’d possibly had Relapsing Remitting MS since I was 25 (in 1978)… i.e. Vertigo, optic neuritis (twice!), trigeminal neuralgia, altered sensation and the hug (Intercostal muscle spasms).
I recognise the symptoms you are describing but, of course, they could be due to other conditions.
Ten years on and I’m still mobile.
It could have been far worse, but I wish it had been picked up earlier.
Could you ask for a second opinion?
Hi Ben, I have a blood test (in 2 weeks!) To check B12 levels as a deficiency can cause the same symptoms I am having. I don’t believe my sypmtoms are due to exhaustion as first supested. Think I am going to go back to see GP as my symptoms are still present and if anything affecting more areas of my body. We’ll see what happens.
Just wondering from your name if you are female. If you are, and looking at your age, have you / your doctors considered preimenopause / menopause? The symptoms you are describing are what some women suffer from with perimenopause.
I was 49 when I got my formal diagnosis, but I had “known” since I was 40.
I spent decades berating myself for not having the energy levels “normal” people had but put it down to “laziness”, caffeine, nicotine, pregnancy, stress, life, work blah/blah.
Of course it all makes sense now - but I’m pretty sure I was written off as “stressed middle-aged menopausal mum” until I got diplopia…
Hang on in there, I’m sure you know deep down whether it’s more than just “ageing” or not.
Hi Alesha, thanks for responding my GP doesn’t seem to be that bothered so will go back in a couple of months if symptoms continue. I think similar to you, they are blaming my age, stress and exhaustion and it’s so frustrating!!
Hi ziola, I am perimenopausal and have been on patches for 6 months now. I suppose it’s a thought, I’ll have to look at all the signs and symptoms of the menopause!
Thankyou
I have now been told all my symptoms may be due to B12 deficiency so have to wait 2 weeks before I can even have a blood test!
my GP doesn’t seem to be that bothered so will go back in a couple of months if symptoms continue. I think similar to you, they are blaming my age, stress and exhaustion and it’s so frustrating!!