Second Opinion Request

[LLH76]

Hi, I haven’t posted for a while, think I felt so frustrated that I just needed to take some time out.

I’m still not diagnosed, but got what I believe is the malar rash (below), Raynauds, depression,fatigue,painful joints, headaches, occasional mouth ulcers, brain fog...but negative bloods.

Rheumatologist put me on hydroxychloroquine over a year ago but at last appointment took me off it (even though I told him it was helping) and took me off his list?!

GP has agreed to refer me somewhere else for a second opinion so starting over again with new blood tests on Monday.

The Rheumy didn’t think my rash was malar, I’ve had it since I was a teen, gets worse with sun etc and this is it today in the middle of November?! Am I going mad or did this doctor get it massively wrong just because I don’t fit his textbook case with bloods?!

[Lisalou19]

Good evening LLH76,

Wow do I feel your pain and frustration.

Please read some of my posts.

I too have negative bloods but all symptoms and have sat in front of doctors with visible symptoms, but as bloods are normal I’m just getting people scratching their heads.

Anyhow I’m so frustrated of feeling like rubbish. I paid to see a private lupus specialist at London Bridge, it cost me I think £240. Anyhow this doctor still suspects lupus even with the negative blood results I took to him.

He kindly wrote to my doctor asking for a 2nd opinion referral to him, this has now been granted. I have an appointment at the lupus clinic in guys hospital. I know the original outlay is a lot of money, but to me it was so worth it. X

[Boudica1 in reply to Lisalou19]

I understand exactly what you are saying and going through. I too have borderline blood test results and a lot of the symptoms but because of the bloods they either scratch their heads or dismiss it.

Currently I'm being bounced around between hospital departments and possibly this or that diagnosis. First they said vasculitis possible GPA then it was some kind of Lupus as I had a borderline dsDNA now another one thinks SS.

So with 5 blood tests since February and a punch biopsy on my back I have now got to have 2 more biopsies 1 from my lip and a slice taken from my back. The one from the back is because yet another dermatologist said no not vasculitis it's something else.

Oh and while all this has been going on I had to have a CT scan of the chest that came back with Emphasyma, bronchiectasis and with some fibrosis.

So I'm still feeling as if I'm up a creek wi

[Boudica1 in reply to Boudica1]

Sorry phone has a mind of its own.

Up a creek without a paddle.

[honeybug]

Hi LLH76

I see myself in this pic. I have Raynauds Phenomenon. I had that malar rash since my 20s. In 2014 after 64 years of searching 2 DNA 🧬 tests I was diagnosed with the rarest form of Erythromelalgia. It often coincides with Raynauds in cycles.

There is a world renowned clinic here in the USA 🇺🇸 known for excellence in diagnostics and care where you can research almost any topic at:

mayoclinic.org

Best wishes and hope you get it sorted soon.

😊🌸🌿🦋🙏🤗💗😘

[LLH76]

Thanks for the replies, I can’t see the picture so wasn’t sure if everyone else could, but to me it looks classic malar?

I will be asking to go to St Thomas’s or st George’s, but if I have to go private first to get my foot in the door of seeing someone more interested in Lupus itself then that’s what I will do!

[Lisalou19 in reply to LLH76]

The private doctor I see did an eye test on me that come back that my eyes were bone dry, something I’ve never had done, and he also noticed a pattern in my skin which I thought was normal. These 2 things alone proved to me that this guy has extensive knowledge. I also let him know that I can not afford private health care, hence the 2nd opinion referral

X

[SVKL]

It does look to me like malar. I have been given a new rheumatologist too, she told me loads of stuff I had never been told. One of which was that my bloods were really good for someone with lupus, but what she said was that, it meant the hydroxychloroquine was working well. I have been on it somewhere between 7-8 years. I do not have the malar rash all the time, but it comes up in bouts and often starts early evening and my leg & arm muscles burn at the same time. If I have been out on a sunny day, even though covered, I still get a very itchy rash on my skin from knees upwards & behind my upper arms. Good luck with your new rheumy x

[Paul_Howard Partner LUPUS UK]

Hi LLH76 ,

As I'm not medically qualified I cannot say whether your rash could be a lupus malar rash or not, but if you are unsatisfied with the diagnosis and treatment plan from your rheumatologist then it is a good idea to seek a second opinion. Whereabouts in the country do you live? If you'd like to let me know then I can give you information about any lupus specialists we know near to you.