Connective tissue

[chrisj]

I've been going to rheumatology since 2005 for SLE checks, blood and urine tests, the usual. The last time I was there the doctor asked if I'd like to go to their connective tissue clinic, its in the same dep at the same hospital. I just said ok not knowing much about the subject or why he asked...

I've had tendonitis in one arm for almost two years having complained about the pain with my gp. She sent me off to the physio and I was given exercises. Physio said the shoulder muscle was flat (it made her chuckle) as I'd stopped using my right arm, wasn't doing much with it. The exercises helped a little and the pain eased somewhat but it still bothers me.

Rheumatology asked me last visit if the pain was still there and then asked me about the connective thing....I know nothing about it so I'm going there completely ignorant about what to expect. In hindsight I ought to have asked a few questions....so my question to you all is whats it all about "Alfie" and is there a much difference in that and Lupus?

[Lupiknits]

In my experience it’s the autoimmune pick n mix clinic. No clear cut 100% “something” condition, or else a mix of several with none apparently dominant, and that’s the clinic.

No harm in going. It may be that they have noticed overlaps?

[chrisj in reply to Lupiknits]

Thank you, you read my thoughts on it, an overlap is what I'm expecting having got that with SLE and Sjogrens. Thanks x

[Lupiknits in reply to chrisj]

I’ve just posted about my rheumy appt. That’s generally for a CTD clinic. I’m ANA+, probably have Systemic Sclerosis, definitely have Raynaud’s, and it looks like Sjögren’s wants to join the party 🥳

[chrisj in reply to Lupiknits]

All good fun isnt it, more party hats needed. Diagnosed with mild SLE, raynauds and sjogrens....I cant imagine there's anything else apart from OA and asthma. Will wait and see how things go, apps end of april. One thing is I had a new doctor last year in rheumatology and he's seeing me more often, I was glad of that

[chrisj in reply to chrisj]

All good fun isnt it, more party hats needed. Diagnosed with mild SLE, raynauds and sjogrens....I cant imagine there's anything else apart from OA and asthma. Will wait and see how things go, apps end of april. One thing is I had a new doctor last year in rheumatology and he's seeing me more often, I was glad of that

[Hidden]

Lupus, scleroderma and myosotis are all classed as connective tissue diseases as well as Ehlers Danlos Syndrome which is a hereditary disorder rather than an autoimmune disease. In my hospital the CTD clinic is for MCTD, Lupus, Scleroderma and Myositis.

Rheumatology covers RA, PsA, AS and Sjogrens usually - possibly Vasculitis too. Hope this explains. I’m under CTD clinic despite have Sjogrens - I was asked which I’d prefer too. I chose CTD as they seek to see patients more often xx

[chrisj in reply to Hidden]

Thank you TT. My visits havent been frequent for SLE and OA checks so being seen a bit more would be reassuring. I dont have any skin issues apart from burning cheeks from time to time and burning easily in the sun along with not tolerating bright lights. Sjogrens is being monitored by the dental hospital but only once a year now, and I've ended up with gingivitis So upset about that as I dont feel it was diagnosed and treated quickly enough, caused by Lupus...they prescribed a steroid nasal spray which was as much use as a chocolate teapot...I'm still dealing with the inflammmation. Hopefully it'll be worth the move then but as things are I'm doubtful...really fed up with it all

[chrisj in reply to chrisj]

I didnt know Lupus was classed as CTD, thats news to me...

[Hidden in reply to chrisj]

Sorry being brief but headache an ongoing reason to try not type too much: There are different types:

“Genetic disorders, such as Ehlers-Danlos syndrome, Marfan syndrome, and osteogenesis imperfecta. Autoimmune disorders, such as lupus and scleroderma. Cancers, like some types of soft tissue sarcoma”

21 Dec 2018

Connective Tissue Disorders | MedlinePlus

medlineplus.gov › connectivetissu...

[Joy_1]

Hi Chris

I have UCTD and am at a CTD clinic. I have only been to a Rheumatology clinic appointment once and there they failed to diagnose me so GP sent me to a teaching hospital outside of my area and the consultants there on the whole have been brilliant.

My current Consultant did his PhD in an aspect of Lupus. He is such a nice chap. Excellent bedside manner. He really seems to understand/sympathize/empathize and that makes me feel even more secure.

I always go in with my notes: how I have been doing since the last appointment, any issues, any queries.

For me I feel like I am getting a MUCH better service at the CTD clinic as they have more experience I feel with dealing with us crazy 'a pinch of this and a pinch of that' folk.

[chrisj in reply to Joy_1]

Thank you Joy, that sounds so positive, its music to my ears xxx It might well be that they have more time in connective, he did say there are more doctors in there, fingers crossed, thank you x

[Joy_1 in reply to chrisj]

In the beginning my appointments were a hour long. These days they are half an hour. I have never felt like they are pushing me out the door.

[chrisj in reply to Joy_1]

Never had an hour in my life in rheumatology, usually 15 mins if I'm lucky, been going over 13 years for SLE and OA. I've seen different doctors one was woman, a professor who was very understanding. She retired shortly after I saw her. Then a male who was keen to get things done quickly and now another male who seems ok so far...I'll probably see him next month

[Joy_1 in reply to chrisj]

Can you request where possible to see the same person each time you go? In the early days I only saw the Prof and was told that I could have his name put on the front cover of my file. After I think 1.5 years I was seen by the 2nd in command and had his name put on the file.

I was told that it's in some charter that you are within your rights to see a certain consultant. However don't quote me on this.

This all came about because on my 3rd (I think) visit I was seen by someone who looked about 10 years old and I was not happy. So she said if you don't mind waiting you can see the Prof and get his name put on your file "it's within your rights".

[chrisj in reply to Joy_1]

I've never been offered that option but it might be worth asking about, thanks. I do recall seeing a younger female doctor some years ago and didnt feel confident with her, she was young as well. The registrar was another who I was very uncomfortable with and I let the hospital know. He wasnt around for my next appointment, they said he's gone so I never saw him again...didnt like him at all.

I'm expecting to see the new guy (had 2 apps with him so far) next time, will see how things go. Thanks for your help and advice, much appreciated

[Joy_1 in reply to chrisj]

You're welcome. Hope all goes well at your next appt.