Sudden downturn: Waiting to see a... - Hughes Syndrome A...

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Sudden downturn

Tomcat profile image
14 Replies

Waiting to see a specialist but my healths took a sudden downturn the last few days, brain fog x1000 pains in my sides (near my kidneys) and pins and needles in my lips. Anyone suggest what it could be? (Sorry for the quick post but I’m at work)

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Tomcat profile image
Tomcat
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14 Replies
MaryF profile image
MaryFAdministrator

Hi, in my opinion I would be seen urgently while you wait for the appointment, you must go and get that checked out asap, as any infection in the body could make you very ill, as well as any clots, please go to hospital and get checked out or ring 111 now and let them triage you over the phone. Pins and needles like that can be a symptom of something playing up in the kidneys, please deal with this swiftly. If your kidneys unknown to you, were having a problem doing their processing function you could get symptoms like this. MaryF

Tomcat profile image
Tomcat

I’ve had the kidney area pains on and off for years Mary, they only stopped when I started taking Hydroxychloroquine

MaryF profile image
MaryFAdministrator in reply toTomcat

If they are worse than usual and you are feeling ill with pins and needles I would still get checked out. MaryF

HollyHeski profile image
HollyHeskiAdministrator

Hi, even though you have had this on and off for years, we can't presume its the same thing.

Your brain fog alone should be telling you somethings wrong.

Are you on warfarin and if so, are you in range?

MaryF is right, worth getting checked out sooner rather than later, prevention of anything serious is always better than waiting for things to go wrong.

Ringing 111 or popping down to hospital would be good.

Tomcat profile image
Tomcat

Not on Warfarin, I take steroids, aspirin, blood pressure meds (x3) and Hydroxychloroquin. Something has definitely changed as my memory and brain fog has steadily been getting worse.

MaryF profile image
MaryFAdministrator in reply toTomcat

Your kidneys remove waste from the body, and if they are not working well this can cause a problem, if it were me I would be on the phone now seeking advice. MaryF

HollyHeski profile image
HollyHeskiAdministrator

Whatever is causing this, it really should be checked out urgently, we really can't muck around when we don't know whats going on with our blood!

I get pins and needles and numbness in my lips, amongst load of other symptoms when my blood is too thick.

Let us know how you get on, we all learn from each other. xx

Tomcat profile image
Tomcat

Will let you know what I find out ...if I remember...

Thankyou both.

GinaD profile image
GinaD

I read this hours later as I am across the pond. Please let us know, if you may, how you are?

Tomcat profile image
Tomcat in reply toGinaD

I’m ok thanks, had blood taken for tests the other day but my appointment isnt until next month.

Yllek profile image
Yllek

How are you doing? Lip tingling is a sign my INR is low and I also suffer from ‘rib’ pain. I realise you’re not on anticoagulants at the moment though.

Let us know how you’re doing and when your appointment is x

Tomcat profile image
Tomcat in reply toYllek

I’m ok thanks. Had a couple of dizzy spells but no more tingly lip etc, also started seeing a memory specialist to try and work out where the fault lies with my memory

Tomcat profile image
Tomcat

Well bit of an update, the last week or two I’ve felt like crap warmed up, having multiple episodes a day despite upping my meds. Due to see a specialist in a week or so anyway so I just have to get by until then. Really,really low at the moment as I’m sick of being ill all the time.

HollyHeski profile image
HollyHeskiAdministrator in reply toTomcat

Sorry you're still feeling low. Glad your seeing specialist, try and bullet point all your symptoms and questions, so that you are prepared and don't forget anything?

I do this as I get a bit tongue tied when I feel worried and pressured with the doctors.

Take someone with you if you can, if not imagine one of us with you, so you feel support. xx

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