Bummed out my unexplained neuropathy

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Hi All,

30 year old, female, uk

(Note to mods; just my story so far not asking for advice)

In March this year I started with vision problems (several eye tests, OCT Scans, and a private opthologist confirmed my eyes are apparently fine) and a tingling in my pelvis area. Doctor said it was likely linked to minor back injury from bed rest so gave physio to do. Back resolved but tingling continued after months of private physical therapy.

Around July I started up with tingling in hands and feet. Went to doctors where full blood count was normal and on a vitamins/thyroid front only my iron was low. Didn't follow up as my doctor had been a battle to listen to me and i assumed the iron was the cause.

In August I noticed the tingling was spreading and now in my thighs/hip and felt like it was in my central body in parts of my back and was spreading into my right shoulder. I went to A&E who did lots of bloods and physical tests (which flagged a vitamin d deficiency that is now rectified). Their only suggestion was as they believed my symptoms were ms and told me to go private for an mri as it would be quicker than going through the NHS. I was in the process of changing doctors so didn't want to delay waiting for registration to go through then lool at neurology via them so took the hit on private. As a fatigue profile to try to find out if there was a connection on the exhaustion i feel but all bloods came back fine (irom back in range but vit d out which i already knew from the hospital bloods). I had an MRI of my brain and spine which came back normal.

Since then the neuropathy is pretty much in my entire body. It's in my face and parts of my tongue and i have eye pain and a constant headache and i'm experiencing slight numbness in my face. It just feels so tight (tried going a&e again and they wouldn't admit me- just said i need neurology) Today i woke up to my jaw feeling tight and aching. I'm on 10mg of amitriptyline to help me sleep as a starting point and on a neurology waitlist. I was downgraded from urgent to routine so i'm looking at a 4 month wait just for the initial consultation. I looked at private and it's around the same time frame of waiting.

Just so scared that it's spreading and all my tests seem to be coming back as normal. I'm so tired, stressed and just super bummed out that i feel like i'm just waiting and watching myself get worse and i cannot do anything about it.

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  • Posted

    I am so sorry you are experiencing this. Ive had a some similar symptoms and like you, have had all the tests. Countless blood tests and a couple MRIs. everything comes back clear. i did have low vitamin D and low positive ANA but everything else clean.

    I also am playing the waiting game as my symptoms get worse. Been waiting to see my new nuero doctor for over 6 months. Doctors ive see all seemed stumped or dont believe me and then pass me on to someone else or say they dont know what to do to help me.

    just know you aren't alone and i'm so so sorry you're going through this. it is scary sometimes. we have to just keep pushing on for answers. i know you're tired and its hard but stay strong and keep pushing. you're not alone and you have support here.

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