To feel devastated by this news?

I was on antibiotics for just over. Year and hiprex for another year months.

I'm so sorry that sounds awful. Your symptoms sound similar to a family member of mine who has long covid, which obviously is triggered by the coronavirus. Could that be worth looking into? She found this helpful https://www.longcovidsos.org/ Hope things start to get better for you 💐

Thank you.
Normal ferritin rules out haemochromatosis, normal MRI makes MS less likely (although it didn't sound like this anyway).

Presume you've had bone profile /calcium/folate in light of the paraesthesia mentioned in the indications part of your scan? I can see you've already had B12 measured

I really think you need an early morning cortisol/PoTS screen. Either of those conditions could fit your symptoms.

Addison's:
https://www.nhs.uk/conditions/addisons-disease/
Can cause paraesthesia/increased thirst and urination.

PoTS:
Website written by just about the best doctor I've ever met on the subject.
syncope.co.uk/syncope-fainting-blacking-out-passing-out/causes/

my bloods have NEVER shown any inflammation spikes when i've been in a lot of pain, so we proved via painrelief testing that something is suffering an inflammatory response.

That being: On naproxen (nsaid) i can function, Off naproxed - i hurt, my joints are stiff/painful in the mornings and after exercise.

I also took myself to a private physio, a rehab specialist who did a thorough whole body check and found issues with my musculoskeletal system that the NHS has pointedly missed!

the physios letter is what got me referred to Rheumatology.

Hi Op, I’m sorry that you’re going through this. I was diagnosed with B12 deficiency via an active b12 test rather than the normal NHS test. It shows the B12 that your body is using rather than the B12 than is floating around, not necessarily being utilised.
I hope you find an answer - the stress of banging your head up against the wall with GPs is an added trauma to your illness.

Can I ask if it was an one-off IV or a course of them?

I can't add anything useful but solidarity as I had a chronic uti which I got treated with long term antibiotics and hiprex privately. Unfortunately I developed vulvodynia which I believe was directly from the embedded uti and treatment. I am still living with this condition and it makes me so angry as if my uti had been treated probably in the first place I don't believe I would have these issues....I would certainly be richer based on all the money spent. I have also lost all faith in our health care service after what I have been through. The only improvements I had had in my conditions I have had to research, push for treatment and pay for privately.

Go back and see your GP and tell him (not sure if you've said but it's always a man) that many autoimmune diseases don't show on bloods / are seronegative and demand a referral. Bring evidence/referral criteria from NHS/NICE guidelines with you. I'm sorry you're so unwell but this thread is enraging me, a GP is totally unqualified to diagnose this.

I didn’t like pacing. It reduced me to a terrified wreck too scared to move.

It sounds like you had Covid and now you have long Covid. I had a nasty Covid infection in 2020 and I’ve never been the same since. So many people are affected by it and don’t even realise that it’s Covid that’s causing it all. I really hope you find some answers. All I can say for definite is: don’t push through it - it just makes things worse. Rest as much as you can and take good care of yourself.

Thanks for this. I think there's a lot of 'default fibro' thinking in GP land when they can't figure out what's going on. GPs should be pretty obsessive when ruling stuff out as a missed diagnosis has a huge impact on quality of life.

I think if I were your GP, I would organise:

1. 9am cortisol level
2. Referral to rheumatology again to exclude eg. Lupus (which can present with urinary symptoms weirdly).
3. A 10 minute stand test for PoTS.

1. Lyme serology if you've not had it.
2. Haemochromatosis has been ruled out by measuring ferritin, right?

Extra thoughts:

1. Presume you don't have MS symptoms. Any historic strange eye symptoms or sensory/movement loss?
2. Have you had any mris or just ultrasound?
3. Presume you don't have conjunctivitis /signs of reactive arthritis.

Take painkillers! If you are in pain it will make your life more bearable. There are no prizes for being a martyr. I hope you feel better soon - sometimes symptoms will lift suddenly for no apparent reason and you may be lucky.

I can't offer any advice but sorry you are going through this.

Rhuematology diagnosed me with fibro this last month, however, i am probably on the milder end of it, i have friends who are floored regularly by the pain.

I'm already on gabapentin for nerve issues, and naproxen for arthritis, so maybe that is why mine is mostly mild.. think fatigue is really my main horrid symptom currently

I do get joint pain, but i'm dubious on it being Fibro and not perfectly reasonable pain like my private physio said based on my posture and antalgic gait (i have a chronic limp) and using crutches putting stress on all of them.

I told Pain Management clinic to piss off (politely) as i cope well with it imho.

I’ve done something similar. Paid a private OTto help me, and a hypnotist to build confidence and reduce anxiety.
I’ve gone from being in bed all day every day to going out, talking with family and friends and just doing more stuff. All in 8 weeks.

I improve every day. I do a lot of talking to my brain to tell it to stop protecting me.

Sk far the horrific parasthesia has gone ( really bad in my eyes) the eye problems that stopped me watching tv and looking at screens have gone, the weakness and breathing difficulties have gone. I still get tired and l m ow there’s a way to go h Tim I’m full recovered. But I’ve literray gone from 0-50 in 8 weeks.

Its been life changing. I also paid out a fortune for things that didn’t work. It’s all about the brain getting stuck and then trying to protect you.

Yes, I was bed bound for 18 months and recovered fully. Read ‘The Way Out’ by Alan Gordon. I know some people are vehemently opposed to the idea that this sort of thing works, but i am living proof that he is right. I spent ££££ trying every treatment under the sun and getting everything investigate whilst o was ill. This was the only thing that worked

I had something like that and I saw a therapist about 4 times a year for literally a whole decade and then I got better. I also got given a litre of IV saline and antifungal pills, and iv vitamins and got rid of a lot of conflict in my life, so it was hard to pin down what made the difference.

I think the nausea with me was to do with chronic dehydration. It was only after the litre of IV saline that that went away.

Good luck there. It's very hard and I really feel for you. Take care ]