diagnosed at last

[Tinkerjack1912]

After 20 years of fighting I have finally got an official diagnosis of non positive ana lupus. Every time I got anywhere with a consultant they left and I had to start my fight over and over. I spent years investigating my symptoms and it always came back to Lupus. It’s taken me to write and write to the consultants and take a million and one photos (I’m sure they could have done me for harassment lol) but I’ve got here now. The most annoying part was that I have been on treatment for Lupus for years and it works.

I hope everyone is doing ok. 💕

[Suvi8901]

It beggars belief how doctors do not seem to understand the basics of lupus:

lupusuk.org.uk/wp-content/u...

Totally unacceptable for lupus and AI sufferers.

ALL medical students must be up to speed with the special blood tests and symptoms!

[MonicaT]

I can feel your relief. So happy for you, that you have a diagnosis. Big hug xx

[Tinkerjack1912 in reply to MonicaT]

Thank-you. Never thought I would be happy to get a diagnosis in writing but I am. X

[ShannonB]

I can imagine just having a diagnosis is a huge relief. I also have seronegative lupus. It’s frustrating because your bloods don’t match symptoms!

[Tinkerjack1912 in reply to ShannonB]

it certainly is, My old consultant verbally confirmed it after putting me on Hydroxychloroquine but never actually wrote it down. It has been a long hard road since then.

[posthinking01]

Well done - me too same - but 25 years - I have a portfolio not of my modelling pics (in jest !) but of my awful symptoms - needs an X certificate to look - had fights with endocrine no rheumatologist as I don't and won't go there as all they want to do is drugs - my issues are thyroid based and I believe a lot of Lupus has thyroid running alongside it - keep that happy and the Lupus is kept at bay. Interesting your ANA etc. is now negative and so is mine but still got the symptoms - well done for helping us all on our journey - I will now quote that there is a diagnosis - non ANA Lupus. Brilliant.

[EOLHPC]

🥰👏👏👏👏 VVVVVV HAPPY for you 🥳…my lupus turned out to be on record as infant onset when the diagnosis was FINALLY recovered in my 50s: immediately after my wonderful new rheumy & my mother explained, I made a champagne l7nch date with my best friend: the only one who had never though5 I was a hypochondriac!

So glad you’ve posted…hope you’ll let us know how the treatment process goes ❤️🍀 Coco

[Tinkerjack1912 in reply to EOLHPC]

thank-you. My symptoms just kept being put down to Fibromyalgia even though I was told different by various doctors.

[EOLHPC in reply to Tinkerjack1912]

🤷🏼‍♀️ Happens to so many of us 🤦🏼‍♀️💞💞💞💞

[Mymittens in reply to Tinkerjack1912]

This is exactly the same as me. I had a positive Ana test, so was referred to the Rhemy, but of course this took 6 months, when re-tested by the Rhemy it had gone back to negative. My ESR is always up, and my protein in my urine was so high, he told me to go straight to the hospital and have an ECG. Still, during my last visit, he actually asked me why I wanted it to be lupus!! If anyone has a good Rhemy in Nottinghamshire, can you please give me their name.. I have all the other classic symptoms of lupus, but he didn't even examine me. So bad.. ❤️❤️

[posthinking01 in reply to Mymittens]

How awful - I have Lupus but with thyroid running alongside it - once I got prescribed thyroid meds I held my Lupus at bay - so I don't see Rheumys the only time I did he told me my dislocating joints were because I had been born double jointed - and that was a private appointment, cost me £125 for 20 minutes. I have been under endocrinology and renal since and pleased really as I find rheumys don't have any new ideas other than heavy drugs which I could not take anyway. But that's just my own situation - I do wish you well - it is so awful for you - I know only too well.

[Tinkerjack1912 in reply to Mymittens]

it is so frustrating isn’t it. Why don’t they understand not one of us wants Lupus or any other condition but what we do want is a proper diagnosis and an explanation to why we feel the way we do.

[CecilyParsley]

well done for your perseverance. I am so pleased for you. I have on my records a Rheumatologist stating “ she desperately wants a diagnosis of Lupus so will be disappointed that I feel she has Bechets” 🤯🤬Who “ wants” Lupus?? This was said because I persisted with photos, symptom diaries etc. When will the medical profession listen instead of judging? Xx

[Tinkerjack1912 in reply to CecilyParsley]

that is awful, I would much rather be fit and healthy than have had to have fought for a medical diagnosis for all these years as I am sure everyone would. One consultant had me in tears once as I overheard him telling some students that “Fibromyalgia is a made up condition” baring in mind that was diagnosed by a consultant at the same hospital at the time and I was in getting my kidneys checked. I refused to deal with him after that. I don’t know what gives them the right to talk like that, after all we are the only ones who truly know what is happening with our bodies. X

[CecilyParsley in reply to Tinkerjack1912]

I think an awful lot of Doctors think Fibro is “ in your head”. I had a Rheumatologist diagnose me with Fibro and “ hysteria”. All because he upped my Hydroxychloroquine to 600 mg and I developed fluid on my macular. Some Doctors simply have no compassion. Xx

[Tinkerjack1912 in reply to CecilyParsley]

you are very right there. Xx

[Cruising2020]

snap! 20 years also I fought Drs - only to be fobbed off - until I had a new GP who actually listened to me & didn’t try to convince me it was all in my mind. I was at the point that I was crawling up the stairs as I was in so much pain & migraines taking over my life and I just felt like giving up. Notes in my medical records of 10 years previously, showed up a suggestion from a Dermatologist, who I paid privately to see what was causing my skin rashes - (this was after my previous GP had told me my rashes were something she’d never seen before & just keep trying antihistamine & not to wear make-up!) the suggestion was to have further tests for SLE. I knew absolutely nothing about this & obviously within that ten years no tests were ever carried out as no one seem to know what “Lupus” was. Needless to say, I was so upset to think such an important thing was totally ignored & of course had been put on all sorts of medications over the years including antibiotics & the original Prozac!

I was actually diagnosed in 1999 and it was revealed that possibly the onset was after my first daughter was born in 1975.

It was a long journey to find out “it wasn’t all in my mind” - however, that’s all history now and I’m actually in remission- I’m the grand old healthy active age of 71. However, Thyroid problems still ever present!

So Tinkerjack, I am thoroughly on your side and know exactly the feeling of being listened to and having an end result. I wish you well & hope you get the support you need. Best wishes

[posthinking01 in reply to Cruising2020]

So sorry you have had such a rough ride - and interested to hear that you have a thyroid disorder running with Lupus.

[Tinkerjack1912]

I am really sorry to read that you had such a hard time also. It is nice to hear that your in remission. Best wishes to you. X

[Ali_B]

This is heartening to hear. I am in similar position where I meet all SLE criteria except for the positive ANA. This has been the case since 2007 where I was given a diagnosis of UCTD but on my rheumatology letters it oscillates between it's being treated as 'UCTD' and then 'Lupus'! Drives me crazy!!!

[Tinkerjack1912 in reply to Ali_B]

I am sorry to hear this. It has been a very long journey. I spent lots of time investigating my symptoms and Lupus. I kept a diary of symptoms and photos and just kept going back.

[Ali_B in reply to Tinkerjack1912]

I too have always kept a diary and photos. I will mention Non positive ANA lupus when I eventually get to see my Rheumatologist! Thank you for your post - it gives me hope. x

[posthinking01 in reply to Ali_B]

Sorry what is UCTD?

[Ali_B in reply to posthinking01]

Undifferentiated Connective Tissue Disease. It's when you display a variety of symptoms that fit with other autoimmune diseases but do not meet the criteria to gain a diagnosis of a specific disease. I have all symptoms of SLE apart from a positive ANA.

[posthinking01 in reply to Ali_B]

Thanks for clarifying.