Hi, this is my first post but I’ve been reading some posts for the last few days.
My situation is this, for over 2 months now I’ve had bother with feeling dizzy. My GP has said it is labyrinthitis, however, I’ve also had strange tingling/numb sensations in my feet and my nose. Now my right leg in particular feels numb and weirdly when I scratch my ankle, my toes tingle. These sensations are making me concerned my problem is neurological rather than to do with an ear problem. My GP has just said she doesn’t know why my nose feels numb but to come back in a month if I’m still having problems.
I’ve also been bothered for about 5 years with odd random prickly sensations in my skin that seem to come and go and can occur anywhere on my body. GP just dismissed this tho.
I would like to go private but seem to need a GP referral.
So really, I suppose I’m keen for thoughts/advice on my symptoms and how to go about getting help privately if any of you have successfully done this without a referral.
Sorry tot hear about your symptoms. I got a number of symptoms including dizziness.
Write your symptoms down, when they start and go. Then go back to your Dr and ask if you can be referred to a neurologist. Then they may do lots of tests, stabbed me all over to see where my numbness was. They may refer you for an MRI.
Ask lots of questions.
Let us know how you get on.
Thanks for your reply Goldrat. Worrying about these symptoms is taking its toll on my mental health too. I don’t think I’ll have much joy with my GP. I’ve also had spells of feeling like my body is really heavy which will come and go. I told my GP about this but I made the mistake of telling her that I googled about the numbness in my nose and she wasn’t too impressed.
I explained that I’m concerned about neuropathy or MS but because when I originally contacted the surgery it was for dizziness and nausea, she is still thinking it’s labyrinthitis. but I doubt that would cause these weird numb feelings. I have found a local private GP and have booked a phone consultation with him at 10.30 on Friday. I will ask him to refer me to a neurologist.
Thanks again for responding to me.
hi there,my wife works in a doctors and she says you should find a neuroligist who you want to see in your area and then ask your doctors to refer you to see them and they have to refer you, if they try to put you off just tell them about your new symptoms.
i had to go private myself after the results of my first mri came back,which took around 6 months from initial appointment to getting the results, and they said there was nothing to worry about, went private saw the same neurologist as nhs he said he had only seen my scan that morning as he saw my name on his private appointment list said it wasnt the scan he asked for so thats why it was unconclusive so advised me to have another scan which they did the following week and got the diagnosis 2 days later that nobody wants but if i hadnt had the second scan i might still be being fobbed of by the nhs.
cost me £1200 quid though or it cost my parents 1200 quid. bless them.
Hi Andy, thanks for the info. Sorry about your diagnosis and that it took going private to get there. Hearing how you were let down by the NHS scan first time reinforces my wanting to go private. I’m increasingly feeling numb. Now my whole right side feels weird. Even up to my face and ear. Really scary.
I will definitely push the GP I’m talking to tomorrow to help me. I’m in a bit of a panic now.
Just an update After speaking to a private GP about my symptoms, I now have an appointment to see a neurologist (also private) on the 31st August.
Just hope he takes me seriously and sends me for an MRI. Although, I realise it could cost me a small fortune. But I’m getting worried about increasing symptoms. As well as the dizziness, and numbness I’ve noticed my right eye keeps twitching. Hate not knowing what’s wrong. I keep looking at my kids and just feel so guilty that I’m on such rubbish form.
Just an update on for anyone reading in future. Possible diagnosis of FND for me following an appt with neuro today. Spinal scan in three weeks to check I’ve no lesions on spine. Brain scan was normal.
Hi Winnie, how are you getting on, same symptoms as me.
I hope you are doing ok. I’m much better now. Thank you for asking. In the end I was diagnosed with post vaccine syndrome. Apparently the AZ vaccine caused my neurosymptons. I still have lingering issues with balance and vision but much improved from a few months back. I hope you are closer to getting some answers too.
Wishing you well.
Good to hear you are doing better!
Just out of curiousity; how is the post vaccine syndrome diagnosed? Or is it a game off exclusion?
I’m asking because i experience neurological symptoms on the left side of my body, including weakness (heavy arms/legs), while scans come back clear.
Your post triggers me, because if i think back now the symptoms started not longer after the covid vaccine.
Hi New here,
I had a bit of a battle getting diagnosed. My first GP dismissed my symptoms, so I went private and paid for a brain scan which came back clear. The private neurologist diagnosed FND. I went back to a different NHS GP as I felt that didn’t quite answer things for me.
The NHS GP did a referral for me. I got a second brain scan which was also clear. The NHS neuro is an FND specialist and he ruled out FND and stated quite categorically that the trigger for my symptoms was the Covid vaccine. Whole process took about 7 months. He said he’d seen quite an uptick in patients presenting with neurosymptons since the vaccine rollout.
If that is the reason for your symptoms then the good news I can give is that I’ve made a good recovery over the last year.
I wish you luck with finding answers.
Sounds like my story. My Doctors were awful and kept doing blood tests and more. Didn’t believe me, didn’t believe much, finally admitted I had weakness in my leg. Fell down 15 concrete steps and still didn’t get listened to.
Goodness Sparks, sorry to hear about your fall. I hope things are better now and you are getting some support. It’s awful to feel no one is listening. x
It’s horrific, I have had a number of falls - and many many stumbles, getting there slowly and starting to learn who I am
Sounds like you’re keeping a positive mindset despite the stumbles. Keep battling for answers and the right support. Wishing you well. x
Same for you I don’t know if it helps at all, but my ms symptoms went crazy when I had my vaccine. I hope you feel better soon.
Hi Winnie that’s good to know. Take care. Unfortunately I don’t think I am dodging this MS bullet.