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Can I have a hand hold

103 replies

user1497873278 · 26/06/2021 18:45

Been in hospital a few days feeling very ill, they don’t know what’s wrong, have been ill for last six weeks, went to my doctor after my husband complained as I was not getting anywhere calling them. She called emergency ambulance, they thought I had sepsis, had bloods X-ray they sent me home, and I have carried on like this,terrible neck shoulder pain head pressure ringing in ears, severe dizziness, no appetite for 6 weeks, temperature, also have problems with feet can’t sit as they go red blue and are painful, originally though feet was down to slipped disc but seems not, feel like everything is connected but I’m getting passed around one says one thing then see someone else, I feel like I have really bad infection, but bloods clear, just raised inflammation, anyone have any reassurance, I’m thinking all sorts, had brain mri that seems ok, chest X-ray, I getting so anxious now as it feels like I can’t remember what it feels like to feel well

OP posts:
user1497873278 · 04/07/2021 11:22

Just had CT scan at last, nervous for results as nothing has changed, and they want to rule out anything sinister, also had another brain mri yesterday didn’t know I was having that it apparently it’s a different one to the normal mri and they wanted to see if there was any change, so will see the constant tomorrow

OP posts:
user1497873278 · 04/07/2021 11:23

Consultant 🤨 sorry

OP posts:
pickingdaisies · 04/07/2021 12:12

They are nothing if not thorough! Those Netflix box sets must be getting a hammering. BrewCake to keep you going

Floralnomad · 04/07/2021 12:30

Hope you get some answers from all these tests and feel better soon 💐

peachcherries · 04/07/2021 13:13

I really hope you get some answers soon OP, it's so awful being poorly and not knowing what's wrong. You know your body best and don't let anyone persuade you otherwise.

user1497873278 · 04/07/2021 15:48

❤️ you are all so lovely thank you for your support

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Sunnyday321 · 04/07/2021 15:56

Just seen your posts , another person holding your hand , sending you get well vibes.

Alternista · 04/07/2021 15:58

That sounds so exhausting, you poor thing. Really hope the scans bring clarity. Are you managing to eat?

user1497873278 · 04/07/2021 19:39

No have had no appetite for weeks now I have lost 2 stone, I’m on some milkshake drinks

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user1497873278 · 04/07/2021 19:40

Thanks haven’t got energy to name you all but reading all posts, so very kind

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Floralnomad · 04/07/2021 19:43

You really need them to do a 9 am cortisol as except for the feet it sounds exactly like I was , I lost about 6 stone in 5 /6 months ( luckily I had it to lose ) .

Izzy24 · 04/07/2021 19:43

You’re doing good OP! Keep on keeping on and we’ll keep on with you 😊

user1497873278 · 04/07/2021 20:17

Thank you I will ask, the support is keeping me going hard each day everyone on ward getting better then leave and I’m same as when I came in

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itsgettingwierd · 04/07/2021 20:22

Sorry to hear you're so poorly.

Hope tomorrow you get some answers. Thanks

WingingItSince1973 · 04/07/2021 21:34

Hope you get some news tomorrow. Poor you, you must feel so hungry! Although when I lost my appetite a few years ago its such a weird feeling. Even if I was hungry I just couldn't eat. Take care and hope you have a good night sleep xxxx

Floralnomad · 05/07/2021 18:03

Any news today @user1497873278 and more importantly are you feeling any better ?

user1497873278 · 09/07/2021 10:48

Having a PET scan today, have had a positive blood result for vasculitis, symptoms match the junior doctor told us it was that but the consultant has said it isn’t, so frustrating I finally thought great sorted at last, how can you have a positive blood test that’s for a specific type of illness and then not have it, I’m exhausted feels like you have to sort it out yourself, blood pools in my feet I can’t sit, I have temperature aching muscles I could go on, just so fed up

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Izzy24 · 09/07/2021 12:06

How frustrating and miserable for you. I really hope your scan brings you some definite information at last so that your doctors can begin a treatment plan to significantly improve things for you.

Grenola · 09/07/2021 12:27

My son had positive anti bodies for vasculitis but didn't have it.
It was the ANCA antibody that he had.
So you may have had those anti bodies? My son ended up with post infectious glomerulonephritis. Took months but is finally better.
Just wondering if you have got a rheumatologist.... In case it is a systematic response to an auto immune illness?

user1497873278 · 09/07/2021 13:25

I am under a rheumatologist she said originally it’s something systemic my blood test was positive P ANCA so was told it was vasculitis think the P defines the type, just fed up as now they are just saying don’t know

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user1497873278 · 09/07/2021 13:32

They have done loads of bloods to be fair and said that other than the PCANCA, they have all come back negative or inconclusive, I just don’t know what to do

OP posts:
Grenola · 09/07/2021 13:50

Yeah that was the one that my son had a positive result for, and they didn't diagnose vasculitis. Even though he was originally. Admitted for that.

I hope they find the cause soon.... And at least they arnt giving up just treating the symptoms.

Grenola · 09/07/2021 13:52

The bloods tests never paint he whole pictures and a lot of the anti body immunology panels take up to 6 weeks to get back, then require repeats after 12 weeks to firm up a diagnosis.

Hang in there xx

P. S

Also there are many strange new systematic reactions/illness related to covid. Could you have had that?

Floralnomad · 09/07/2021 16:56

I’m sorry that you are not feeling any better @user1497873278 , hopefully they will find out what’s wrong soon .

birdbrained · 10/07/2021 12:01

Hey OP I've just been diagnosed with autonomic dysfunction. Basically it's my nervous system not functioning as it should so heart rate shoots up when I stand. Bloods and BP all fine. Lots of vague symptoms- chronic fatigue, dizziness, nausea. Red/blue feet is quite a well known symptom. Worth having a look at autonomic dysfunction/ postural tachycardia syndrome. Good luck!