Another noob here

[FabledPilgrim]

My first post ... hello world!

Got my diagnosis yesterday ... 20 years in the making. I suppose it's better late than never ... the story of my life! 😂

[eekt]

Welcome aboard, what a delicious moniker you have! Think are a couple on the forum who spent thirty years on the diagnostic odyssey so you're in good company...hope you have a treatment plan to match the diagnosis and a good bunch of docs! Merry Christmas! xxx

[Josiah150767]

Hi welcome to the group. A very supportive bunch and Merry Xmas

[Forgot2mention]

Hi and welcome. You will find lots of info on this site. Merry xmas, stay safe

[Spanielmadlady]

A merry welcome to you .I hope 2021 brings you a treatment plan and some relief from your symptoms. Have a restful Christmas xxx

[Jmiller623]

Welcome FP!!! Interesting username. Would love to hear about its origin.

Hopefully, with a diagnosis comes treatment and a new lease on life. Sending you Christmas cheer and some hugs. ❤️xx

[Oshgosh]

Welcome to the forum.I suffered from what I know were symptoms of lupus for over 35 years.they were all treated on a symptom by symptom basis.

I hope you get some treatment and that you are under the care of a good rheumatologist . Take care

[eekt in reply to Oshgosh]

Oh gosh Oshgosh...35 years!... 'hasn't she done well' as Brucie would say...Merry Christmas! xxx

[Spanielmadlady in reply to eekt]

I dont like to think of me suffering from lupus for 35 years.......I'll be 86 !!

[eekt in reply to Spanielmadlady]

We'll have treatment before you're sixty...I'm optimistically hoping covid research will help lupies! Merry Christmas! xxx

[Spanielmadlady in reply to eekt]

Well some good has to come out of all this ..... 9 years 6 months and counting lol. Happy Christmas have a relaxing safe one x

[Horsewhisper in reply to eekt]

“Nice to see you eekt.....to see you NICE!” 😂

[eekt in reply to Horsewhisper]

😂😂😂...cuddly toy coming up! Thanks Hw, Merry Christmas! xxx

[Horsewhisper in reply to eekt]

Great! If that wasn’t on the conveyor belt I was hoping for the teasmade! 😂😂😂

[stiff19]

Woah such a long time, I hope you get the help you need for the diagnosis and have a happy safe Xmas 🙏

[FabledPilgrim]

Thanks for the welcome 🤝

[leeniebeanie726]

Sorry to read you were diagnosed. It took over 20 years, and countless horrible flares. Before I found a very good doctor. She saw my diagnosis, and quickly referred me to see a rheumatologist. I began treatment in 2007 . I hope finally now you can start treatment, and feel better. Keeping you in my prayers. Have a Very Merry Christmas. 🙏🏻💜💙😊🎄

[Horsewhisper]

Hello and welcome! 👋 I’m sorry it has taken you so long to get to a diagnosis and I hope you get some relief from your symptoms soon. Lots of people here with similar stories to tell along with fun stuff to share! Happy Christmas! 🎄🎅

[svfarmer]

Hi 🙋‍♀️ and welcome to the group x

[CecilyParsley]

Hi FabledPilgrim welcome. I am so sorry it has taken you so long to get a diagnosis. You will find acceptance, understanding, humour and compassion here. I really hope that you get some ease from your symptoms and have a Merry Christmas 🎄🎁🍾🥂 xxx

[BeeManShrop]

Hi FP -- and welcome. 6 months ago the word Lupus was just starting to be used for my wife's illness because she had returned a dsDNA test of over 1000. So far we have seen nearly 20 different consultants in their various fields. On Monday we saw an ENT specialist who is now referring us to a Maxilla-facial consultant and so the trek goes on. It was only when the ENT chap said "have you had a definite diagnosis of Lupus" that we realised that we were not sure whether we had or not.Can anyone tell me if there is a definite procedure to declare you with a "diagnosis" of Lupus? Is it just a verbal statement from the rheumy? OR do you get an official letter or a certificate to put on the wall with a lapel badge -- (sarky - sorry)? Happy Christmas to everyone!!!

[FabledPilgrim in reply to BeeManShrop]

Hi, I'm not sure which part of the world you live in but here in the UK there is a criteria which a Rheumatologist uses to verbally diagnose and then you get a letter which formalises the diagnosis. If you're lucky you mighty get a sticker and a lollypop ... or am I thinking of the dentist? 😉😋 I certainly sympathise as when you've seen 20+ 'experts' who all have their own opinion it's hard to keep track of what's what.

[daffodill2]

Hope they look after you well most of the doctors are lovely take care

[Cruising2020]

Well done on surviving your long journey. 20 years for me also, but have survived another 20 years - still with a smile on my face and currently in remission . Hope you’re receiving the right treatment. At least you know it wasn’t ‘all in your mind’ as many of us here we’re all beginning to think, or being led to think!Best wishes to you and keep your chin up x

[FabledPilgrim]

Cruising2020 Thanks for the encouragement. Glad to hear you're in remission. Yes, I can think of at least one so called 'expert' who suggested I was exaggerating my condition but he was the exception thankfully. Following my diagnosis, my immediate reaction was relief but when I got home it felt a bit anticlimactic. I started going over what had been said and the 'impostor syndrome' kicked in doubting whether it was the right diagnosis. I just have to be patient as I still have so many questions that need answering and then maybe it will sit right with me. If the meds start to help my symptoms then I'll be happy regardless.