Mixed tissue disease

[Ygould]

Hi, I've recently been diagnosed with mixed tissue disease after suffering with symptoms for several months. Im confused , scared and unsure as to what the future looks like. Does anyone have any advice or tips on this conditon and how to control my symptoms. I have great big sausage fingers!

Thanks

[Hidden]

Hi there. Sorry you have had this diagnosis of MCTD. Did the diagnosing rheumatologist not explain that there would be some kind of treatment they would put you on? MCTD can develop in a number of ways I believe. For some the Raynaud’s is the most problematic aspect, others will have skin involvement and others will present in joints or internally or more as Lupus or Myositis. If you need support the helpline attached to this charity, SRUK, is very good. Take care and I hope your rheumatologist can get you on an effective treatment if you need one. 😊

[Ygould in reply to Hidden]

Hi,Thankyou for your reply. The rheumatologist didn't explain anything at all. I have an appointment in 2 days for a scan on my hands but when I queried if I would be having an appointment to have a chat about my diagnosis I was told no. I'm so confused and I'm afraid to look on Google. I don't understand how I can be diagnosed with no help or advice immediately.

[Hidden in reply to Ygould]

I don’t understand this either? Could you speak to your GP perhaps and say how upset you are not to have been given any information or support?

I have to say that I’ve only ever received support following each diagnosis I’ve been given over the last ten years. And each diagnosis has been harder to process - especially as there’s been some uncertainty with 2 out of 3. It’s not like a diagnosis of cancer where people can walk into Maggie’s Centres etc because all these diseases, apart from RA, are rare. I’ve never had a rheumatology nurse even because my overlap syndrome keeps shape-shifting. This is why charity helplines such as SRUK, NRAS, BSSA (Sjögren’s) and Lupus UK are so important for us. If I were you I’d look on charities for more about your symptoms and diagnosis. Ask for copies of all blood work and letters directly or from you GP because being well informed really helps.

I know someone with MCTD who is in her 50s, only gets treatment for Raynaud’s, works full time and seems to manage pretty well. So please don’t despair - it’s rare but there’s a lot you’ll be able to help yourself with. X

[Ygould in reply to Hidden]

Hi, Thankyou for your message. I've left several messages with my gp hopfukky they'll get back to me soon. It's nice to know there are others out there who are so supportive. Thabkyou so much.

Stay safe x

[Hidden in reply to Ygould]

You’re very welcome. I meant to write that I’ve never had any support from hospitals or doctors following each diagnosis. But coming to these forums and phoning charity helplines and joining local groups has been invaluable. X

[Ygould in reply to Hidden]

I'm so sorry to hear you've had the same issues also. It's such a big blow and Google searches scare me lol. Im so glad I found this site and I think it's going to really help me. Thankyou so much

[Hidden in reply to Ygould]

Hey no worries. One day when you’ve come to terms and hopefully got onto good treatments as I am you’ll be here to help newly diagnosed people too 🤗

Meanwhile here are two very reliable sources of information about MCTD for you so you can avoid Dr Google. X

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

sruk.co.uk/scleroderma/defi...

[Ygould in reply to Hidden]

Thankyou so much, I'll have a read of those links. It's so nice to connect with others in the same situation a si don't know anyone who has this. And I wasn't expecting it myselfx

[Hidden in reply to Ygould]

Aww you’ll get there but you will need lots of kindness for yourself and from friends and family until you’ve digested it all more.

I have overlap connective tissue disease which is mostly Sjogrens syndrome and systemic sclerosis/ scleroderma and hypothyroidism. But years ago my main diagnosis was Rheumatoid Arthritis - so I’ve got used to spanning several diseases and related communities rather than just one. X

[Ygould in reply to Hidden]

Oh my life you must be a tough cookie to manage everything! It's great that theres support out there and I'm eager to learn as much as I can and find some natural alternatives for painkillers etcx

[Hidden in reply to Ygould]

That’s me lol 🏋️‍♂️🍪😉xx

[Hidden in reply to Ygould]

Ps you need to double click on each link - I’ve taken them from SRUK and Lupus UK - two excellent charities I’m a member of.