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Life-limiting illness

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So desperate any advice please, lymphoma/vasculitis

4 replies

user1497873278 · 10/01/2022 09:40

Long story, will try not to miss anything out, posting on here as I’m desperate and hope you all don’t mind, but I’m so ill, txting is hard work. All started about April last year suddenly felt very breathless had to come away from play area with my daughter, had an odd few weeks had to lay down then get up do something, then got high temperature racing heart ringing in ears dizzy aching couldn’t move lost my appetite totally, lost stone and half, doctor saw me after3 weeks called emergency ambulance as she thought it was sepsis, sent home unable to walk further than toilet, doctor over the following few months has sent me back in, as have no appetite on and off temperature, more weight loss, so after PET scan mri many bloods, I have been told at first I had vasculitis because of positive p ANCA and in flamation plus my symptoms which seems extensive haven’t listed them all diarrhoea, burning sore eyes sweats and an awful feeling that never goes, as if I have an infection, nausea dizzy hot, sleeping tablets give little amount of sleep as I wake because of how I feel, so they have asked kings for an urgent referral that was 2 months ago, I can’t manage much to eat, trying so hard, but when you feel so sick it’s hell. I’m fading away my husband and sister are in bits as they don’t know what to do they have both been on phone, talking to my consultant, had a blood test befor Christmas that showed very low oestrogen so have patches for 2 weeks feel no different, was so hoping the sweats and feeling so hot all the time might ease, but no change, just hoping someone on here might have been through something similar, my sister said yesterday I need checking for lymphoma, as I have had something flag up to do with red blood cells and lymphocytes in august, she noticed this and googled after looking through some blood tests we had done by endocrinologist privately as they thought cortisol might have been problem, also had to have liver scan as had high levels 300 but scan was clear, sorry for long post, but I don’t know how many mor hours I can bare

OP posts:
Suzi888 · 10/01/2022 21:28

Sorry- that sounds awful Flowers I’d go to A&E…. I’m sorry that’s not very helpful and I hope someone can give you better advice. All the best.

ashitghost · 11/01/2022 03:15

Go back to gp and ask him to send you for an X-ray. Say you haven’t eaten for weeks.

EewwwDavid · 11/01/2022 04:27

I had lymphoma, and my bloods were normal, so skew blood results aren't really much to go off where that is concerned. Also you had a PET scan, and if you had lymphoma, surely that would have lit up like a Christmas tree and been v obvious. Obviously I'm no doctor, but I wouldn't be worrying about lymphoma if I were in your position (having had a clear PET).

Definitely go back to your doctor if you're still not well.

user1497873278 · 11/01/2022 09:25

Thank you for the replies, the doctor doesn’t know what to do with me, they just want to send me to a&e because I look so ill, but a& e isn’t really working as my doctor has sent me twice once in an emergency ambulance, we are just so desperate

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