To seek medical advice from internet strangers? Nerve/spine doctors would be a bonus

[TheHalfDeadMother]

This will be long. I'm desperate for help. Anyone who can give me any advice what to do or what this might be I will be so grateful!

Background

Moved house 2018. Gave myself a bad back for a few days and then my toes went numb. Didn't see dr

2020. Was working physical job long hours. Shoulder neck started hurting. Pain down my arm. Started wetting myself. Hospitalised for 5 days as was just in agony. MRI showed degeneration to my spine they were not concerned discharged me. I went straight to a different hospital who said I was dehydrated, had UTI and urine retention. They made refferals and gave me antibiotics and better painkillers. I improved over next couple months but still not fully functional.

Bad back from sitting since then. Agonising pain develops if I sit. Walking really helps. I can’t sit and watch tv of an evening. Driving hurts. Anything sitting must be avoided.

It's only in the last year I've actually managed to see drs. Spent 3 years being referred all around with everyone saying it's not their department I need.

Bad back leads to my left leg giving out and falling if I’m not constantly paying attention and ready for it to give out.

Loss of grip strength and feeling in my left hand and arm. Variable but always a problem. I use plastic cups now I’ve dropped so many drinks.

I can’t pee half the time. Scans shown I’m not emptying it for 4 years now. Because I’m constantly leaking no one thought it would be causing problems. They been saying it's birth related as I had a baby 2022 but these problems predate that. Got taught self cather couple month ago and I pissed loads for days. My ankle swelling and the hard mottled part of my stomach went. Clearly I had edema. I can now tell when I need to pee, I think what’s happened was I stoped know I need to pee because I was always full so always needed to pee.

Catheter nurse said my bladder prolapse was probably caused by all the straining to pee. Her and urologist surprised I’m not bothered/aware the prolapse. Learning to self catheter I’ve discovered it’s actually visible for the outside

When my lower back as been bad for a few days I can have very short notice to poo. Had a few accidents. Although this is not as common a problem now I’ve worked out sitting makes me worse.

I’m going 5+ days between showers sometimes as stepping into bath difficult. I got a bath seat but even so it’s hard to do when I’m pain as that’s sitting. And with the falling over when I’m bad I just avoid it. I can’t wipe my arse properly either. I’m disgusting.

Had a nerve study done on my arm. Man who did it said it showed significant stuff happening. But the spinal consultant today said not enough to account for the symptoms I claim. He clearly thinks I’m lying and want unnecessary spinal surgery. That’s at the C7 part of my spine they can see it on MRI nerve study confirmed but consultant say it should not affect me to this extent it's not a problem.

Neurology have discharged me. They rules out MS.

MRI a year ago showed minor nerve impingement at C5 C6 and L4 L5

I have a theory that MRI is done laying down and if they MRI me say up they would get a different result.

My sleep is poor. I’m tried all the time. My cholesterol is a bit high. I get gestational diabetes but recently checks I’m not full diabetic yet.

No medication other than paracetamol ibrprophen. Tramadol when I’m really bad. Tried gabapentin 3 years ago and I thought it was helping but got pregnant and stopped it dead without symptoms changing.

My 9 year old has to help me get my clothes on some days. Does my shoes and socks. She makes breakfast for her 2 year old sibling far too often. I have an autistic child who takes all the energy and attention I have spare, and a 2 year old. I feel terrible for my girl. The other day the kids had cereal for all 3 meals sorted by the 9 year old because I was crying in pain and just couldn’t cope.

I just made such a scene in the hospital when the spinal surgeon said he’s dischargeing me as there is nothing wrong if I get worse go back to GP. IM TERRIFIED I can’t look after my kids properly and if I keep getting worse the older two will have to go into care (2 year olds dad would take him but he’s not dad to the others) I've asked the older kids dad to have them more/consider being resistant parent he initially agreed thinking my sons DLA was equal to his salery then backed down when he realised its not going to make him rich. My family can't manage my autistic son. There is no one who can help me.

I can limp on as I am but if i get worse my kids will suffer an unreasonable amount. Currently 2 year olds dad baths him after I said I can't anymore after loosing my grip on him/him refusing to get out and I'm not strong enough to grab him and not drop him in the water

Anyone know what could be the cause of my symptoms?

OP, l haven’t got advice, it must be so difficult not knowing, what’s causing this.l just really hope you get some good practical/ medical advice, people who can relate.I’m following your post.

I would suggest you go to see a specialist neurological or orthopaedic physiotherapist - privately, for speed. They will give you a really good examination - probably no-one has ever done that? It's really not on to rely on scans for a diagnosis - they should only be a back-up and confirmation of what the doctor has already decided on examination.

Once they've done that, they can write to your GP (and/or consultant if you are still under one) who can then refer you with, or act on, the extra information they give.

I think you need to pay for a private consultation. You shouldn't have to but I think for the sake of your health you're going to need to. Call up your closest private hospital and find out how much it is for an appointment with a spinal consultant - you're probably looking at between £150 to £300 for an appointment. The consultant will also likely be employed by the NHS and so will have access to your precious scans etc.

I'd also advise keeping a pain diary between now and the appointment, details pain levels and daily symptoms so you can show them a clear picture of your life.

I'm surprised given the severity of your symptoms that they haven't even offered you a nerve root injection or something even if there isn't a target for surgery. Good luck x

Previous - not precious 🙄

OP I could I've written this 10 years ago. Investigate SI (sacroiliac joint) pain. I'm sorry to say that nothing has cured mine, but after feeling almost suicidal with the pain, and looking at losing my business and possibly my house, I found an osteopath who ran her own Pilates classes for her patients. I have since learned that stretching is my saviour, once I learned to do it properly. BUT, I also could not have managed without these things:
a) opioid painkillers (and diazepam for when my back went into spasm
b) a driving support cushion from

https://www.backinaction.co.uk/?gadsource=1&gbraid=0AAAAADDgI3s34wloo6Mr5RLuwzL8cfevb&gclid=EAIaIQobChMI79S2fb8iAMVE4lQBh2rgjzeEAAYASAAEgLfsvDDBwE

(I can only describe my pain when driving as though it's as if my 'suspension' has gone) - they are an amazing family run company who can't help enough and can hire out very expensive equipment to those who can't afford to buy.

Above all, it WILL get better, (sorry but it took me years), and I wish you all the best.

A patient of mine (I do medical interpreting) has had almost exactly the same symptoms and was also pushed around from pillar to post. A recent nerve conduction test on her legs pinpointed trapped nerves with very specific details, and some other problems.

Thanks for the advice. I can't afford to go private. I looked into it and the price was just too much. I'm not working a) because I'm carer for my son but b) I don't think I could work anymore.

I've tried physio. I've tried osteopath. Back when I was working and could afford it. Neither made much difference

That's the test they did on my arm! The giy who did it used the word 'significant' when I asked him what it shows. The consultant today said the findings were not enough to account for what I "claim" my symptoms are. I said but it's all my limbs and my lag keeps giving out the nerves to my bladder and bowl obviously involved too and he refuses to test them. Said the impingement shown on MRI isn't bad enough.

It's driving mead because they can point to impingement on the MRI and the nerve conduction shows there is issues but the consultant was adamant it's not bad enough to explain my symptoms. The fact he used the word "claim" tells me he doesn't believe me. And I just pissed him off when I said I googled the symptoms of nerve impingement at the places the MRI shows and I have all those symptoms.

You need a second opinion. And you need nerve conduction tested on your legs too.