Do I have Lupus? : I've been experiencing symptoms... - LUPUS UK

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Do I have Lupus?

Char458 profile image
14 Replies

I've been experiencing symptoms for over 8 weeks now and am wondering whether I have Lupus.

My symptoms:

My foot going blue and having a numbness sensation on the right side of my body. Very painful joints especially in the foot, wrists, knees and hips, also the jaw. Achy all over and very tender to touch. I get red patches all over my body at random times which are very bad after coming out of the shower. I keep coming up in an odd rash. I’ve had very bad gastric reflux to the point where I was constantly throwing up everything I ate, I have also tasted blood. My face has been drooped. I’ve had an annoying crawling sensation all over my body which feels like tiny insects are on me. I’ve been sensitive to light, sound and smell. I’ve had ringing in my ears and something keeps clicking in my head. I’ve had air hunger and chest pain and pressure. I’ve had a stiff neck and insomnia. I have also had thinning of my hair and night sweats. This past week I've had many problems with my head; such as a constant headache, vision problems and loss of hearing.

I have had 2 positive ANA blood tests.

I seem to bruise easily which is a recent thing and my nails are see through at the top and around the nail bed its constantly red.

Thanks for reading :)

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Char458
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14 Replies
misty14 profile image
misty14

Hi Char458

What a horrible collection of symptoms for you. Whilst I can't say if it's Lupus or not , it must be one of these auto-immune illnesses for you to have 2 positive Ana's.

You need a referral to a Rheumatogist who might be able to diagnose you. Take a picture of any rash and take it with you. You also need an urgent referral to a Gastroenterologist because of your stomach symptoms especially if you've tasted blood! Good luck with everything, hope you get some answers and treatment. X

JJKANE profile image
JJKANE

The only thing that concerns me about your symptoms is when you say your face has drooped.

Have you been to the GP .

There are things called TIA which are like mini strokes, and although your other symptoms are indicative to some form of systemic condition I would go to GP . hope you get sorted

Love and prayers

JJ kane

Purpletop profile image
Purpletop

Start keeping a log of the symptoms and when they have occurred. A GP would probably think that 8 weeks of such heightened activity in your body is a bit too sudden and will either tell you that is stress or a virus and send you home to wait for few more months, or, if you have a properly documented timeline, actually refer you to a rheumatologist, on the basis that you've probably had other symptoms before but didn't take into account. Two positive ANAs are not sufficient for diagnosis, as you probably know. I don't know what other autoimmune tests you've had and their results but a rheumatologist will re-do everything, listen to your symptoms and take it from there.

Char458 profile image
Char458

Hi everyone thanks for your reply's!!!

I have been referred to a rheumatologist who isn't too sure what it is and has repeated the ANA blood tests.

I am apparently being referred to have a stomach scan but that will probably won't be for a few months.

I went to the doctors after my face drooped and they didn't really seem too concerned and they did an MRI but apparently a stroke only comes up after having an MRI with a dye?

I have kept a log of my symptoms which has become very useful!!!

Thanks again everyone!!!!

a_Scot profile image
a_Scot

Hi Char458

it may not be a good idea to use medical terms below when speaking to a doctor,

( they may mistake you for a hypochondriac ) , but if you're googling it may be useful to know that …

“ an annoying crawling sensation all over my body which feels like tiny insects are on me”,

is called formication … en.wikipedia.org/wiki/Formi... .

“ around the nail bed its constantly red” ,

is a description of periungual erythema ... google.com/search?tbm=isch&...

“ringing in my ears” ,

is called tinnitus ...en.wikipedia.org/wiki/Tinnitus .

“something keeps clicking in my head”,

Possibly stapedius reflex firing inappropriately … en.wikipedia.org/wiki/Stape...

[ the auditory equivalent to pupils constricting without an appropriate bright-light trigger ].

but the clicking could be your jaw if it usually occurs when eating / speaking.

You definitely need to see a rheumatologist , ( they may refer you on to neurologist because of your apparent neurological involvement ).

Char458 profile image
Char458

Hi

Thanks so much for the medical terms!! Won't use them with any doctors though!

I've been to a rheumatogist and she's not too sure and has said that my doctor should refer me to a neurogist but whether my doctor does or not is a different matter

Thanks for your reply!! :)

Bonnie39 profile image
Bonnie39

Have you had your lupus anticoagulant and clotting time tested? I say this because I suffered what I thought were severe migraines for months a decade ago, which culminated in a face drop with weakness throughout my left side. CT scan at the time was unclear of the cause, MRI last year showed I had indeed had a stroke and many TIAs. I am now treated for APS and awaiting treatment for SLE too as my kidneys have started to fail.

Not trying to worry you, but weird drops etc need proper investigation.

Char458 profile image
Char458

Hi,

Don't think I've had a lupus anticoagulant and clotting time test.

It is a bit worrying so hopefully if I get referred to a neurologist they might be able to help.

Thanks for your reply :)

Adamventure profile image
Adamventure

HI char458 you have a remarkable collection of symptoms , and you have just received very good advice from our friends , however it seems odd that no one is testing your blood more extensively , you clearly need a rheumatologist and a neurologist perhaps one of these could get a more comprehensive test arranged , sometimes it helps to have all the blood tests at the same time and to be honest you need much more than just an ANA check . Maybe a haematologist would shed some light on what is wrong with you , really sorry I cant be more help , I sincerely hope you get a diagnosis and some treatment soon.

Char458 profile image
Char458 in reply to Adamventure

Hi, it's quite irritating not having the right tests but I have been referred to a rheumatologist and they have done some blood tests but I'm not 100% sure what ones they are. The rheumatologist said that I should go to a neurogist but my local doctor seems not to be listening to me.....

Thanks for your reply :)

MaryF profile image
MaryF

Hi you need to be tested for Hughes Syndrome and also Sjogrens disease and often with all this goes a Thyroid problem. I hope you get some help with your problems. MaryF

Char458 profile image
Char458 in reply to MaryF

Thank you for you reply will bear that in mind :)

miacat profile image
miacat

Hi I've had lupus 15 year

Started with my joints hurting went to docs and had a blood test. There was brown dots in my cuticles thats how she knew

Char458 profile image
Char458 in reply to miacat

I also have brown dots in my cuticles. Hopefully this will be picked up on when I go for a raynauds test soon

Thanks for your reply :)

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