Update on Rheumatology Appointment !: Oh well a... - LUPUS UK

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Update on Rheumatology Appointment !

Jacqueline_J profile image
4 Replies

Oh well a little update, I went & seen the rheumatogilist & was told by her since my doctor did a ana test & it was negative she would not bother doing another as i've been unwell for so long it should have probably shown up positive ?? So she sent me for a nuclear bone scan ? I've still not had the results & I'm still very much ill :( so fed up ! I'm now on 3 monthly injections for pernicious anaemia and take vitamin d, I can't wait 3 months for the injections I was crawling before my last injection so when I see my doctor next I'm telling him I need them every 2 months & if he doesn't agree I have 5 vials they gave me home I will inject myself. The rhuemo doctor said having fibromyalgia and M.E is like a cancer patients pain in their last days & I will need to try & accept my diagnosis well sorry if I want to be healthy & nobody can help, currently dealing with pain, wasted muscles, bloodshot eyes & swollen eyelids & blood in my urine, sores up my nose & that's just today 👎 tomorrow I start my dental treatment to try & repair my damaged teeth. Does anyone know what the purpose of a nuclear bone scan was for ? Thanks x

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Jacqueline_J
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friars126 profile image
friars126

With those symptoms, I'd be tempted to go private and see if they think it's seronegative lupus. Even if they don't, you'd probably feel happier knowing it's been thoroughly investigated.

Friars xx

Jacqueline_J profile image
Jacqueline_J in reply to friars126

Hi there thank you for replying, do you know how much it costs for private tests ? I'm so sick of being sick :(

friars126 profile image
friars126 in reply to Jacqueline_J

I think it hugely depends on where you go but I say a post where someone said it was about £400. I was getting seriously tempted to do that, even if I had to put it on my credit card, it seemed like a small price to say for the right treatment but my ana is now positive so I'm being referred now. It's awful when you're so ill and no-one can really tell you why. I hope you can get some answers xx

Jacqueline_J profile image
Jacqueline_J in reply to friars126

God that's a amount I couldn't afford :( I haven't been able to work for 10 years & don't claim any sickness benefits its a struggle with finances but I think I might ask my mum as I can't go on like this anymore the last 10 years have took its toll & all I want is to be well, I'm sorry to hear of your diagnosis and hope your not having to bad a day ❤

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