Help I'm Lost

[Vickmt]

Hello I was looking all over the web to find info about lupus and what it is.....I have had hair loss for a couple of months now I visit my doctor and he run some blood test a few day later he calls saying my ANA number are high and have to go in ...so my ANA numbers were 1:640 considering that normal range is 1:40-1:60 he referred me to a specialist which he drew some blood also for further testing I'm waiting for Tuesday to get the results I have had besides hair loss Shores inside my nose I'm just wondering how some of you got diagnose what were your first symptoms? From experience any of you think I will get a positive help I'm lost

[misty14]

Hi Vicky

Good luck for your blood results on Tuesday. Hopefully , you will find out which immune illness it is and start treatment.It must feel very overwhelming for you. If it's lupus, you've certainly come to the right place for help and info. Lupus uk 's website is full of good info which I'd advise you look at rather than dr Google as a lot of Internet info can be worrying and misleading. One of my first symptoms was hair loss and joint pain. Fingers tightly crossed for you for Tuesday and let us know how it goes. X

[whisperit]

Hello Vickmt,

My first symptoms were shortness of breath and shooting pains in my hands; these both became chronic and have improved with treatment. Misty has given you good advice. In case you have difficulties finding it, the LupusUK leaflet on symptoms and diagnosis is here lupusuk.org.uk/wp-content/u...

[Stef82]

I was terrified when I saw my Rheumy that he would say it’s not Lupus. At least it was an answer to most my issues and I knew where I was and got the right medicine instead of being pumped full with Antibiotics.

The thing with Lupus is though, it’s not like one bloodtest result can confirm it really is Lupus. It could be so many other things. My experience is rather bad with NHS as they don’t have the funds to do all the testing and half the stuff that seems now important to my Lupus wouldn’t have come up on NHS tests. I was lucky my work insurance covered it all but NHS has misdiagnosed me for a couple of month.

You will probably still also find a lot of doubt even if you have high Antibodies from Medical Staff. My ANA is 1:2560 and I’ve been told my medical NHS staff that with my blood results they don’t think I have Lupus.

It’s a long road but keep pushing your doctors to tell you why they think you have it or you don’t have it. Lupus is a combination of symptoms, not just a black and white bloodresult on Paper.

Best of luck

[Chanpreet_Walia LUPUS UK]

Hi Vickmt,

Welcome to the LUPUS UK HealthUnlocked Community!

Hair loss can be a symptom associated with lupus, to find out what other symptoms are associated with lupus you can download or request our free information pack here: lupusuk.org.uk/request-info...

Last year we published a blog article called ‘Coping With Hair Loss’ which contains helpful tips and information which you may like to read: lupusuk.org.uk/coping-with-...

Diagnosing lupus is often difficult. It is a condition that can mimic other illnesses and presents with different symptoms in each person. We recently published an article on our blog about ‘getting a diagnosis of lupus’ which you can read here: lupusuk.org.uk/getting-diag...

We published an article on our blog about coping with oral and nasal ulcers which I hope you will find useful: lupusuk.org.uk/coping-with-...

Before attending your appointment you may like to read our blog article about getting the most from medical appointments here: lupusuk.org.uk/getting-the-...

Good luck with your appointment, let us know how you get on.

[Vickmt in reply to Chanpreet_Walia]

Thank you very much for all the information

[Vickmt]

Hello everyone!!! Today got my results back and doctor told me I tested positive for ANA 1:2400 and positive for TPO... doctor said not to worry cause I didn't test positive for lupus (or maybe I understood that ) he proscribed me with xydroxchloroquine and gave me an appointment in 3 weeks... I Googled the name of this medication it says if used to treat lupus and rheumatoid arthritis I'm confused more than ever

[Paul_Howard Partner LUPUS UK in reply to Vickmt]

Hi Vickmt ,

Hydroxychloroquine is helpful in treating a number of different autoimmune conditions such as lupus, rheumatoid arthritis and Sjogren's syndrome. Based on your test results and symptoms that is probably why this has been prescribed, even if you don't yet have a definite diagnosis.

Has your consultant done any more tests? Have they suggested what it could be if it isn't lupus?

[Vickmt in reply to Paul_Howard]

Hello..yes he tested for a. Few more diseases but all came back negative my next appointment is in 3 weeks I guess he will want to run more test and hopefully we have something some kind of answer

[Paul_Howard Partner LUPUS UK in reply to Vickmt]

Let us know how you get on.

If you need any tips for preparing for your appointment, please have a look at our blog article here - lupusuk.org.uk/getting-the-...