diagnosis

[Dodger12]

good evening all, I wish you all a happy new year.

I have been having signs of Luous since March 2024. After numerous tests including bloods and rheumatology appointments. I have been diagnosed with Fibromyalgia.

3 of my Lupus blood tests were positive, 1 negative. This is the reason for the diagnosis.

however I am slowly deteriorating which include 3 toe nails to fall off, diagnosis of dry eye. I feel like I have something in my throat but unable to remove it, even if I cough.

please can anyone advice me on what I need to do to get listened to as I feel like I’m going crazy with no one listening to me.

[sarahalice]

Hello.Sounds like you have Sjogrens. Ask your gp for some eye and throat lubrication, it does help with the symptoms.

Did they give you any meds to help with the fibro?

[Dodger12 in reply to sarahalice]

Hi Sarah Alice,

Thank you kindly for your reply.

I was given pain relief, anti inflammatories and something g to help me sleep, but they make me feel worse.

Kind regards

[Lizard28]

Hi, Happy New Year to you. I know it’s very frustrating trying to get a proper diagnosis, mine took about 10 years, eventually I was diagnosed with MCTD which at the beginning I thought it was a cop out as they didn’t know what it was causing me the illnesses I had at the time, I was diagnosed when the rash I had was really bad and inflammation markers were high, I was biopsied and bingo, finally a result. I’ve had rashes before but by the time you see a dermatologist it’s gone, this time I was seen in a few days but the rash stayed with me for a long time, it took a while before the treatment worked. I would say write all your symptoms down, take pictures and don’t give up. Best wishes

[Dodger12 in reply to Lizard28]

Hi,

Thank you kindly for your advice and response. So glad that you finally got a diagnosis and receiving the correct treatment.

Take care

[FredaN]

It does seem many of us here have similar stories of feeling dismissed while struggling with our health. I was told Fibromyalgia in 2023, but asked for a second opinion (NHS) with someone specific because I knew they could carry out a test I thought would be helpful. After seeing them, they agreed something was going on and diagnosed me with Undifferentiated Connective Tissue Disease.

When you say 3 of the Lupus tests were positive and 1 was negative, which tests are you referring to? I only ask just in case someone here has had similar results that can help.

[Dodger12 in reply to FredaN]

Hi,

Thank you for your information, much appreciated.

The 3 tests I had were ANA antinuclear antibody .

Many thanks