Lupus diagnosis yesterday

[BonnyB]

Hello everyone, been a tricky few months. You all know what it's like.just wanted to update and i feel a bit overwhelmed. In 2020 was diagnosed with UCTD. Positive ANA. Take hydroxychloquine.

Last year ENT diagnosed sjogrens, it was an urgent 2 week referral as my throat had been sore for months, lost a lot of weight and kept choking.

Been on waiting list for over a year for dermatology, rash on face, itching scalp.i had this appointment yesterday. Said its SLE lupus.

I'm now waiting to go back to rheumatology as consultant said she wants to change meds but wanted to rule some other things out first. This was a ultrasound of hands on Friday where arthritis was ruled out and nerve and muscle test at neurophysiology Monday am, followed by dermatology Monday afternoon.

Like many of you have posted previously its a relief to have it diagnosed but on the other hand it's really hit me hard and I'm worried about the future. Feel better today, think I just found these last few days a lot to deal with, lots of tests and racing about.

So 2 autoimmune diseases diagnosed out of the rheumatology team.

Wanted people to know who are still on the road to diagnosis that going to these other appointments to rule out or who specialise can bring results too.

Much love

Ps. I'm now a proud owner of an electric bike, which I've had so I can sit on it and still get out and about and have some freedom. I'm planning on using it lots and I'm looking forward to it bringing me some joy x

[VeeWat]

ask them to rule out myasthenia Gravis as that can cause choking too.

[BonnyB in reply to VeeWat]

Thank you but I've been a lot better in that department since sjogrens diagnosis. Got lots of remedies on prescription for dry mouth, eyes etcthe dryness made it difficult to chew and swallow and painful. It just became too much of chore to eat at one point. X

[HazelW]

Good luck . You'll find lots of support on here and the staff at Lupus UK in Romford are amazing. Keep fighting ! I always say I'VE got Lupus - it hasn't got ME ! Stay strong 💜

[BonnyB in reply to HazelW]

Yes, I'm more positive today. Think it surprised me to get the diagnosis from dermatology . Thank you x

[CecilyParsley]

Hi Bonny what a relief for you to finally have a diagnosis. I am relieved for you lovely. It is something you never want but now it will open the door to new treatment plans and hopefully feeling better for you 🙏🏻❤️ xxx

[BonnyB in reply to CecilyParsley]

Hi, hope you are well. You fight for it so long, then it cones as a shock when it happens. I really hope so, looking forward to better days to come.

Xxx

[CecilyParsley]

I really hope things improve for you Bonny. This AI journey is swings and roundabouts but hopefully now you are on the right path xxc

[MusicalFurbaby]

Diagnosis can be bittersweet. On the one hand, it can be terrifying to consider the future and the what-ifs…on the other, it can be a relief to finally have an answer for the madness with which you have been living. Personally, I found diagnosis to be a sweet relief after 8 years searching for a diagnosis! The shock will wear off as you adjust to the day-to-day of living with your symptoms. You kinda get used to rolling with the punches—sort of! The big ones can still knock us sideways. But as others have said, there’s always support here. Feel free to post anytime. x

[BonnyB in reply to MusicalFurbaby]

Thank you x

[Stills]

enjoy your bike 🚲

[BonnyB in reply to Stills]

It's exciting, I'm off on it this weekend to take my mind off things x

[Diagnosis_Collector]

I also got my diagnosis this week! Well it's been changed from RA to lupus after spending the last 6-8 months amassing a variety of symptoms and diagnosis. I'm finding it quite terrifying too, with RA it was just my joints but Lupus is every part of your body and it's scary!

[BonnyB in reply to Diagnosis_Collector]

Oh have you.i hope you get the treatment needed. Yes, it is isn't it. But after a few days I'm now in the mindset of knowledge is power after going round in circles for a long time( on the brink of going lupus centre excellence) .

From what I understand on here and a book I've read it's all about preventing,( through meds) it affecting major organs. Plus having to cope with the daily symptoms lupus, which isn't easy.

I wish you much love x

[Diagnosis_Collector in reply to BonnyB]

I think I'm in a bit of shock tbh. My RA symptoms have been pretty well controlled over the last 6 months with only 1 flare so I was expecting the rheumatologist to reduce my appointments and tell me I'm doing fine. I hadn't considered lupus at all. When I got diagnosed with RA I went hell deep into the Dr Google rabbit warren and got pretty down with it all so I'm trying not to do the same this time. It does concern me though that I've been on medication for the last 3 years for my RA yet still symptoms have manifested/increased.

The mental impact of a diagnosis is never really discussed or dealt with!

I also have an electric bike and it's so much fun! Feeling the fresh air on your skin and having the option to be active on the good days but knowing you can still get out and about on the fatigue days is great!

[BonnyB]

Perhaps your medication will change now and you will be on the path.This is a great book, only a couple of pounds from ebay.

Oh have you, well I enjoyed it this weekend, but the cold prevented me going on it for a long period of time. I'm looking at trails that have trees around and overhead for shade in the summer. Dermatology recommended a good factor 50 on amazon that I need to get ordered too.

Keep in touch and lots of love x

Great book