Newbie to the group

[Dousey85]

Hi guys, my name is Gemma, I’m 33 and I was diagnosed with lupus SLE at 15, I also have Raynaud, vascilitus, hypertension and other bits and bobs, just recently I was diagnosed with mixed connective tissue disease and have sadly lost 2 fingers on my dominant hand. I’ve joined here to find people who understand what I’m going through and hopefully we can support each other,

[whisperit]

Welcome Gemma. It sounds likke you've travelled a hard road already. This is quite an active forum so hopefully you'll find it helpful - and I'm sure people will benefit from your experience too x

[eekt]

Hi Gemma! Welcome aboard! That's a seasoned turn of phrase, 'bits and bobs' for such serious illnesses, but you're a Pro already with 18 years+ on the diagnostic odyssey XOX

There's a survey amongst the pinned posts that's part of a research project with the aim of shortening times to diagnosis, having medics not dismiss our symptoms and having support from doctors in dealing with life-long illness, and your experience would provide valuable insight, I'm sure.

The very wonderful Barnclown has lost a dominant-hand finger due to misdiagnosis over very many years, so if you were willing to share your experience, it could help others to be on the alert when the system fails.

Glad you're with us, keep posting, and be strong xxx

[Dousey85 in reply to eekt]

My amputation journey started last June when my right ring finger turned blue, I was admitted to hospital and put on a drip called iloprost which is a vasal dilator, after 3 days of 16 hour infusions the dr informed me my dose was wrong, this caused my little finger to die and go black and had to be removed.

The rest of my hand continued to go blue a lot worse then it had been, over the last 18 months I have been on and off the drip with no improvements and despite me telling my drs it’s not working they keep putting me on it.

In October I lost my index finger due to the same problem, which they said was vascilitus from day one to then tell me in October it was mixed connective tissue disease and finally gave me a tablet called bosentan, during the last 18 months because of their constant mistakes I have lost 2 fingers, had 3 mini strokes, become so low I have attempted suicide once and threatened it a further twice. I currently live on morphine to control the pain I constantly suffer and I’m waiting to have an operation called a sympathectomy.

Lupus wise I don’t suffer directly but as I keep been told it’s all connected and is involved in one way or another

[eekt in reply to Dousey85]

Thanks for sharing Gemma, that is absolutely horrific, what you have gone through..it's so much to take in , the mistakes, all I can say for now is HUGE HUGS and you're here now, and we're always here for you...please keep posting xxx

[Barnclown in reply to Dousey85]

Hello Gemma and welcome...reading your post & response to eekt has me feel so many complicated feelings...you’ve been dealing with a lot of extremely tough probs...not the least being medics doing harm while presumably trying to do good (on the other hand, we all know professionals of all kinds can be ignorant, lazy and downright wrong...)..i am very sorry about everything you’re having to cope with, and i can’t help identifying with what you’re telling us. Eekt is right: my dominant hand has taken a beating over & over in the course of its 65 years, with medics messing up a lot...i try my best to look after it, and it puts a brave face on - more or less, much of the time...tonight it’s feeling a bit lower than usual...it’s sending your dominant hand a wave 🤚😉

I am very glad you’ve found our forum: this wonderful group of fellow sufferers also includes highly approachable + experienced lupus-aware & health system savvy staff at LUK head office who make a point of being here for us in THE most helpful way imaginable

you’re right: cause our conditions are “systemic” they can’t help overlapping throughout our bods: every manifestation needs to be thoughtfully analysed into its component parts so all the right disciplines can be called on for specialist multidiscipline help as needed, every treatment needs to be considered for contraindications due to the implications of our comorbidities. Nothing about this is straightforward, as you know all too well. For sure, this forum really can help make the going that bit less of a struggle

🍀❤️🍀❤️🍀❤️ Coco

[Dousey85 in reply to eekt]

Haha yes bits and bobs does sound casual, but by that I mean non lupus related, I suffer from type 2 diabetes, arthritis and diverticulitis as well as my lupus, raynauds, and mixed connective tissue disease, 18 years is a long time but I had been relatively healthy until about 4-5 years ago, drs tell me I’m lucky to have been diagnosed so young because the illness hasn’t kicked in until now, lucky?? I never understand how they can say that

[eekt in reply to Dousey85]

Ah, the medics view...a week in our shoes and they'd be weeping too...so glad you've shared more in your new post, hope you have lots of helpful replies, keep posting XOX

[Chanpreet_Walia LUPUS UK]

Hi Gemma,

Welcome to the LUPUS UK HealthUnlocked Community. We have a really lovely and understanding community here, who are always willing to help!

Mixed connective tissue disease (MCTD) is an autoimmune disease that is considered to be a cousin of lupus. We published a factsheet on ‘LUPUS: and Mixed Connective Tissue Disease’ which discusses symptoms, complications and the treatments available for MCTD. To read this factsheet, please click here: lupusuk.org.uk/wp-content/u...

It is possible that some treatments for lupus such as prednisolone (steroids) could trigger or exacerbate depression and/or anxiety. We recently published a blog article on ‘coping with depression and anxiety’ which you may like to read: lupusuk.org.uk/coping-with-...

Sometimes certain situations can be tough which is why talking to someone can help reduce any worries or anxiety you may have. If you would like someone to speak to, I can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at [e-mail]

We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...

Please keep us updated, wishing you all the best.

[Krazykat26]

Hi Gemma

Welcome!! U have been through so much..u will find support on this site from people who know how it is living with this debilitating illness..and sometimes we have a good old giggle which definitely makes the day brighter!! We talk about all kinds of things..we share experiences and it's a great place to get good advice from people who understand. X

[Lupiknits]

A very big welcome! Thank you for sharing so much of your terrible journey. We’re a friendly lot, as you see from the other posts. I’m sure you’ll find this a great place to be x