It rumbles on going private

I’m so bloody fed up
I saw a nuro surgeon almost 5 months ago long story short he said I’d obvious long track signs and needed seeing urgently by a nurologist. Alas he said my gp had to do the referal. 4 months on and the referal has been bounced back and dismissed due to the blasted gp not giving enough info so they basically think there’s nothing wrong. I’m fed up to the back teeth and so reluctantly I’ve decided to seek a private nurologist. I go to see Dr Oliver Lily on 11 August. I just want answers. I’m exhausted all the time, numb thigh, pins and needles, stabbing pains, at random body parts, horrendous , brain fog, stiff limbs, heavy fealing in limbs, insomnia. on and on it goes.
Hopefully I’ll get answers or at least be taken seriously usly


Hi, that’s a name I recognise. He has a very good name in Leeds.

I was once referred to him and he refused to see me.He told my local neuro to repeat the LP.

Let’s hope you get results.


What’s lp?

I’m just so fed up.
I’ve had every blood test going over the past 3 years, nothing shows up, I’ve had mris of all my spine, head. Only thing that ever showed was white dots on the brain but even though this, was flagged as needing further investigation and a neurological review it just got ignored, not helped by covid and not being able to see gps. I’ve not seen a gp in 3 years everything’s done via phone calls and on line msgs it’s Nutts.

It might and probley isn’t ms it could be fibromyalgia or just general inflammation god knows but it’s effecting the quality of my life. The brain fog is really getting me down and the constant utter exhaustion.

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I feel your pain and fear and exasperation.
You know your own body and you know that somethings not right.
I too am waiting for neurology appointment and my referral went in end of April.
Because I live rurally I had to see medics who did some tests on balance movement and told me he didn’t think it was demyelination as I was showing no signs of it. Possible dehydration and not enough protein in my diet.
I got in the car and cried. I’ve got parts of me going numb, profound fatigue and legs some days that are encased in concrete to name a few symptoms.
It’s being in this limbo place of not knowing what but knowing that there is something not right.

Hang on in there.

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I’ve not seen Oliver Lily in person but the neuro I did see left the trust, Dr Lily took over my case and sent my GP a letter saying I was being discharged and that my only symptom was jaw pain. This was completely wrong and my GP wrote to him multiple times to say there had been a mistake, I had a whole host of neurological symptoms and not one was jaw pain. Unfortunately he refused to review my case and now I am waiting for a second opinion referral. I hope your experience will be better.

Thank you for all taking the time to reply.
Thegos fine my referral letter which I’ve to collect. Hopefully the bloke I’m seeing will at least listen to me.
I’m beginning to think this could actually be parkinosons,but I e thought its, been everything under the sun from Ms to fibromyology, mnd alsorts I blame go ogling. But when you don’t get any answers and fague it could bes but no follow ups you do Google stuff.
The other day my right arm started to twitch drove me mad, just the lower part.Im always in tears I’m just fed up.

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I feel your pain, the time between scans and appointments is ridiculous the only reason i have an appointment on monday is because i drove the consultants secretary crazy i think!
They send letters after the scans which mean nothing just want answers now very similar symptoms to many of those described in this conversation

My MS journey started with a private consultation with Dr Lilly at the Spire after his had a very bad experience with a NHS neurologist (who I have been told is no longer working for the trust :see_no_evil:).

I found Dr Lilly amazing, he was very through and is too the point. I did want to continue my journey with him but sadly he said the treatment options are exceptionally expensive and he said he would recommend I switch back to the NHS and his NHS clinics do not cover my postcode area.

I have a friend who has also been treated by Dr Lilly in Leeds and found his amazing too.

Hi Paula, I’ve just been reading the thread. I too also have an appointment with DR Oliver Lily on the 11th of August at spire hospital in Leeds. I live in the north-east but have decided to travel to see him. What time is your appt? Two months ago I have seen another neurologist and also had MRI scan of my brain, c spine, thoracic and lunar spine which has also shown nothing as well. I’m seeing DR Lily for a second opinion on my MRI images and a full consultation. Hopefully we will start to get some answers. :pray:

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Hi i was diagnosed last summer via a private neurologist at spire in Elland, i have since been transfered over to the nhs under the care of dr Lily at Leeds, at first he dismissed my diagnoses changing it to cis but then i had a further relapse a few weeks later of optic neuritis which was also confirmed by mri so then he had to change it back to ms and i was then started on treatment. I still see the private neurologist at elland despite being under the nhs too as i have alot of trust in him as he was right with my diagnoses from the start

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Thankyou all for replying
I saw Dr Oliver lilly he was fantastic. Long story short I’ve not got ms or parkinsons.
He looked at all my scans and looked at the letters bloods everything. He assured me that there was nothing at all to worry over that the mris were reported incorrectly that none of the changes were worry some and all were consistent with any normal person my age. He then gave me a thorough physical examination, hitting me with hammers, walking about, alsorts nothing was wrong. We then talked and for once someone listened. He went through my war and peace list of symptoms. He immediately said, my numb leg was a trapped nerve but it was fine just pinching now and again. He said everything I described was caused by years of stress which was amplified when I lost my sister in 2020 to brain cancer, I also have a, autistic son, basically the stress and anxiety triggered physical symptoms which then triggered health anxiety and created a vicious circle. Through talking to him I realised he was spot on. He suggested I self referred to iapt nhs therapy to talk through things and change my thought process. I’ve done that and have an I initial assessment next week. I’ve immediately started to sleep, and the aches pains and headaches have gone. It was worth the 240 consultation fee. In three years of ringing my GP every few weeks not once have they asked to see me, just a, two min right blood tests, now scans even though I told them at the time I’d had a traumatic time re my sister. Sometimes you just need to be listened to heard and time given.

Dr Lilly was fantastic very caring defiantly recommend.

He said I’d no Controll over any of it and the physical symptoms where real but consistent with extream anxiety, the proof being I’m already seeing improvements.

Hope you’re appointment went well on 11 too.
Mine was at 5.45.

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That is good to hear. I am very glad that you are feeling the benefit.