I have some questions concerning my health regard... - LUPUS UK


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I have some questions concerning my health regarding suspected lupus! I’d love everybody’s views please!

Sharshar001 profile image

Right my aunt has lupus and had overactive thyroid! My mother had antibiodies in her blood when she was pregnant with me and I was born with severe jaundice but healthy although I was never treated for antibodies (but I would be in this day and age) I’m 39

I’m pretty healthy! As a kid I had my appendix out and at 25 and 27 had 2 cesarians! With my first pregnancy I had a minor seizure at the start (but intermittently during my youth I also suffered from strange bouts of fainting and weird shaking fits, I could hear everybody talking like I was under water or black out completely, lost so much weight back then too, very easily) right back to my pregnancy it went fine although I always tested high on protein and sometimes high in sugar also had some red marks appear on my upper arms like spider veins midwife said are they flea bites (I had no pets then) at the birth the midwife acted me to death screaming at me I had been starving myself as I have key tones in my blood! I honestly had not! My son was born small at 6lb but speedily gained weight like triple his weight in 3 weeks

Then to my second pregnancy no complications except after c section on the sew up doctors could not believe the amount of scar tissue that had accumulated in just 3 years! every health professional commented on that!

Jump to 2012 and I don’t take any medication or anything feel fit had just lost 3 stones on a diet and felt great then got two strange calcium depots one near my knee and one on my wrist then my waist length blonde hair fell out so badly I had to cut it off! It became so coarse and dry but thin not thick ! my liver become enlarged for no obvious reason! and I only drink probably two times a year I passed out during a vowel movement while out in public toilets shopping my heart rate dropped so badly I had 1 beat per minute and had to be defribulated then the next day when I woke up everything normal except swollen liver so they ask questions and home I went had liver watched for 2 months then nothing it was still swollen but apparently no further action needed!

I take no regular medication except at that time I had the implant to prevent pregnancy I then got hospitalised for high temp and suspected water tract infection just randomly came on and then had a crazy episode hearing my friends voices who were not here shouting even though I knew it was strange and told docs they said mania can come on with high temp !

It was scary and lasted a day then temp went and I went home!since then hot flushes every now and then I didn’t think much of it as I’ve always been a hot person especially at night! and then really hot! Sweats I presumed perhaps early monpause onset Face goes bright red so does chest! Last week I had a very strange episode of gerd I’ve had this before on a few occasions it’s quite scary but this time got so very close to passing out felt awful

And just after a pain that felt like tooth ache started on the left st the back of my mouth then traveled to the front of my jaw so painful I could not move lasted 5 minutes then totally disappeared! I thought I was having a stroke it was like tingling moving nerve pain sounded like a computer scrambling information the whole time

My hands now occasionally tremor for no reason or set amount of time until today I thought nothing of it! I have a small frame and often shiver anyways!

So tonight I get the hot flush and red marks my hair starts to itch (oh I also have to add my hair has gone crazy in last year no eyebrow growth white hairs on chin growing out shiny hard skin (plucked them out) my hair on head sooo grey in one year and my pubic hair is fine on front of body but underneath has turned white and brittle in about two months I have also been diagnosed with ovarian cysts as my periods stopped for 8 months I had 2 scans now sort of spotting every now and then so carrying on tonight suddenly my hands hurt in a numb way and they are cold (as usual) then the weird tingle pain starts in my hands and starts to move around my whole body , in weird jumping buzzing numbness feeling but like it’s my skin not my muscles as I type this my vision is starting to unfocus so badly I have one eye shit! This has never happened before! Pain in my wrists and abdomen like bubbling and my mouth is dry and sore all day ! Extremely dry with white scaly lips! The hot flush is now passing but this is feeling like the beginning of 2012 my head is itchy and my hair when I scratch is falling out again and feels dry it’s been greasier than normal for the last month until today

I feel a bit shaky and hot eyes blurring again!

Do you think I need to see a doctor

Do I have lupus?

My family are from Spanish heratige?

3 Replies

Hi Sharshar001

By all means YES you definitely need to be seen by a Rheumatologist and Neurologist.

Save everything you’ve detailed in this post to show these specialists. You’re too young to be suffering these plethora of symptoms.

Don’t let anyone...I MEAN ANYONE tell you you’re crazy nuts it’s all in your head it’s somatic dysfunction or dismiss you.

I would go private if at all possible. NHS is good but for very complex problems like yours I fear you’ll be seen as a hypochondriac or crazy.

When our bodies have symptoms it’s telling us something is wrong. If we’re wise (as you obviously are ) we’re in tune with normal as opposed to the not normal bodily functions.

You have really been through the wringer my dear.

I have been sick all of my life. For the first few years my mother was good at taking me to the doctor to treat my ailments. Then she was overcome by mental illness and addictions and I just suffered in silence.

4 years ago at age 64 (I’ll soon be 68) I was finally treated by a 🌟 Neurologist here in the USA 🇺🇸 who diagnosed me by 2 DNA 🧬 tests to confirm the diagnosis and she conferred with other top specialists in the world that I am 1 of 3 in the world 🌎 with my rarest form of inherited Erythromelalgia.

It took me 64 years to get diagnosed and a specialist’s detailed report on paper proving all the other doctors that called me a nut 🥜 case were WRONG WRONG WRONG!!!!!!! 👏👏👏🎊🎉

So don’t give up until you find a doctor that LISTENS and CARES about your well being if you cannot go private.

I’m sooo very sorry you’ve had all of these problems dear.

I wish you the best and I just said a special prayer 🙏 for you to get tested and the proper care that you need.

Take care and abundant blessings.

EvaJo 😊🌸🌿🦋🙏🤗💗😘😇🕊

Yes, you need to be evaluated by a doctor. My sense would be your GP would run tests and might make an immediate referral to a neurologist. The brain can do all kinds of strange things. Try not to focus on whether you have lupus or not. Right now your first step is a thorough evaluation with appropriate referrals to help with diagnosis. Keep us posted. And wishing the best. KH

yes please see your doctor and tell him/her what has been happening - why not take a copy of what you have written here?. Ask for an urgent referral, and if the doc doesn't take blood tests then the hospital will. Are you on medication - many can cause scary side effects. I wish you well and to be helped. Muchos besos xx

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