Hi everyone, i’m new here and feeling very lost - i’d be so grateful for any advice.
I’m 31 and have not yet been formally diagnosed with MS, but I’ve had several symptoms and episodes over the past year that are becoming harder to ignore. I was recently admitted to hospital, and the doctors said I needed to be urgently referred to neurology within a month - but it’s now been over two weeks and I’ve heard nothing.
I’ll list a brief summary of my timeline below:
April 2024
I was experiencing blurriness with my left eye and pain. This happened on and off for months.
November 2024
Numbness in my hand and pins and needles in my arm and severe fatigue. Eye spasms. Cleared up in a few weeks
Referred to Ophthalmology for my eye.
May 2025 - have been off work since then.
Severe fatigue, brain fog, right hand numbness and losing grip, legs feel weak and heavy, sharp pains in body and neck, now my right eye is going blurry in the top right corner. My arms feel incredibly heavy.
I sought a consultation from a private GP who said it sounds neurological and said he will write to my doctor. He said “I feel she would benefit for a neuro examination and a referral for neurology. I am concerned about the possibility of MS”.
I had a hospital appointment for my eye in May and after scans - they noted that my right eye optic nerve is damaged and possible glaucoma.
I was admitted to hospital in late June 2025 because my symptoms have become worse. I feel very unbalanced when I walk, sharp pains down my neck and back and feels like hot rods being poked in my legs.
I had blood tests, nerve conduction test to check for carpal tunnel etc, CT scan and they all came back clear.
I then had a brain and spine MRI - spine is normal (apart from slipped discs and arthritis) - however my brain MRI says “Few scattered periventricular white matter FLAIR/T2 bright signal foci” - after this, I was told by the hospital doctor that I have lesions on my brain and I needed to be seen by neurology within a month and would receive a letter.
I had an Ophthalmology appointment on Thursday for the follow up from my scan in May. He asked why was I walking like that and asked for my symptoms, which he wrote down. He read all my notes from my hospital admission and said he needs to do tests. He done a colour blind test and visual tests and a scan of the back of my eye. He said I do not have optic nerve damage or glaucoma - I have optic neuritis. However the previous MRI done at the beginning of the month said my eye orbits look normal.
This doctor was very compassionate and said I should have been seen by Neurology now and he’s writing an urgent letter to them.
I have chased up with Neurology 3 times since my discharge from hospital and nobody is getting back to me. My GP said i’m just tired.
I have been keeping a log of any new symptoms. My right eye has been very blurry (like a patch of it on the top right corner?) since Thursday and this is the longest it has ever been like that. My right eye started to become blurry last month but only for a minute or so. On Friday, after a tearful conversation with my GP on the phone, I had a very sharp squeezing pain around my waist and it felt like it had knocked the wind out of me. Sharp pains on my right side. I had to sit on the floor and I sobbed because I was so scared. It lasted a few minutes and after this, I was completely wiped and my right arm had gone numb. Yesterday I had random electric shocks all over my body - legs, feet, hands, neck.
I still haven’t been given an appointment. I’m scared I’m being left to fall through the cracks.
What can I do if neurology still hasn’t responded and I was told I should be seen within a month?
How do I push for next steps - especially if I don’t have a diagnosis of anything yet?
I feel incredibly worried about what is happening to me. I need help from friends just to take my son to and from school. Daily life is exhausting. I feel like I have completely lost myself and I am so incredibly exhausted having to advocate for myself, and worst of all, that I am not believed.
I have been off work since May and I am being made redundant in August so going private is unfortunately not an option for me. I just want my life back.