I feel like I'm going crazy!

New diagnosis and before diagnosis
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Hi everyone,

I need some advice. I feel like I’m going crazy and no one is taking me seriously.

I have had another ‘episode’ of my wonderfully weird symptoms, but no one seems to be taking them seriously, let’s give you some back ground;

-Back pain since I was 16 I’m now 30.

-2017 Severe pain in right leg, with numbness and pins and needles (Put down to sciatica)

-2019 Extremely low vitamin D with pain in right leg and right arm (Given high dose of Vit D

-2019 Diagnosed with Papilloedema (only found out this month June 2026! Nothing has been done about that and still get eye pain.)

-2021 Lost feelings in both legs, right leg pain, right arm pain, numbness around my groin, right hand weakness. Hot flushes, weird sensitive patch on face. Had MRI and they put it down to 2 prolapsed discs I have in my C and L spine.

-2024 vision changes almost like my peripheral vision was shaking with lights. Told me it’s most likely migraines with an aura.

-2026 now pain is back in right leg, weakness in right hand is back, pressure feeling in eyes, hot flushes and now a new symptom, it feels like the hulk is squeezing my lower ribs (not all the time but it lasted 24hrs then now it’s every so often lasting up to an hour) I went to GP and they’ve referred me to a physio. They said it’s my prolapsed discs.

I have spoken to a neurosurgeon but it was COVID and only ever over the phone, at first he did mention MS but then changed his mind when he saw my MRI and the prolapsed discs.

Can this really all be my prolapsed discs or are they not listening to me?

I don’t think all these symptoms can be prolapsed discs, I don’t want it to be someone serious but I also don’t want to be left feeling this way

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Hi @dannileiigh

I don’t know what is going on with health care anymore. I think we either get lucky and find good consultants, or we don’t. You and I are in the same camp!

The rib cage pain you described, I had that twice last year, felt as if I had a tyre wrapped around me. It was very painful to take a deep breath, then in a few days, it was gone completely. I have a list of symptoms which I have recorded over time. The neurologists face was a picture as I read it all, he was on his 2nd side of A4 paper!

So far I have been told it’s my fibromyalgia causing my right eye vision disturbance by an ophthalmologist, it’s migraine by the neurologist (who was struggling to stay awake and had only a few of my brain MRI images) , and another ophthalmologist who did not know. The only person who took me seriously was my optometrist, who referred me urgently to a neuro ophthalmologist, but that referral got mislaid!

Your history sounds very frustrating and I think all we can do is keep on trying to get answers. My next step is tomorrow to talk to my GP and I will ask to get the neuro ophthalmologist appt sorted ASAP. I have been off work for 3 months now, I can’t see properly with my right eye so I can’t do my job.

I really hope you can make steps to get more help. Xx

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You deserve to be told exactly what is going on, what can be done about it, and if any more tests/referrals can be done to rule out other things!

I am not a doctor and so take this advise as such but I was under the impression that problems with eyes are from brain down, not spine down. Someone please correct me if I’m wrong here as really don’t want to misinform.

If I were you I would be going back to GP and/or opticians to see if they can refer you. Opticians was how I got referred to ophthalmology and then onto neurology. It did take a few appointments and I had to mention it was not for standard eye check but for eye health problems. Persistence was key.

I really hope you get some information and answers soon!

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