Hello everyoneA forum friend has given me this picture of the different criteria for UCTD diagnosis. I'm posting it as i think it gives more info on each one and so will be helpful for newly diagnosed or diagnosed sufferers like me. It can be confusing!.
Hope you agree and are keeping warm in this freezing weather.
MistyXx
Thanks Misty. There is so much overlap I get puzzled how they differentiate. As you know I seem to have had so many changes of diagnosis so I do think it is complex for the clinicians also. Any news on the Gastro appointment? Xxx
Good point, Cecily. That is why it is probably why we hear so many rheumatologists hesitating to diagnose unless it is certain. You take the cake in terms of number of related diagnoses!
This visual really helps.
😘 Kay
Ha ha yes I seem to confuse the medical profession quite a lot. Hopefully my new Rheumy can get to the bottom of my symptoms, I do think, based on my own experiences using labels and terminology is confusing and unhelpful initially. Not only confusing but scary too. Many do not explain properly if at all. I remember asking questions of my first Rheumy who had diagnosed Lupus and he just handed me an ARC Leaflet and that was that. It was only when I saw the Haematologist that he asked me what I knew about Lupus and I said nothing really that he spent half an hour going through issues to be aware of and what help and support I could get. From seeing sone of the posts on this forum, sadly the process does not seem to have changed for many. It angers and upsets me xxx
So good to see more on uctd my family don't understand it.I was first diagnosed between rheumatoid and lupus at 16 with blood clotting of lupus causing ulcers they thought i was cured as blood tests were getting better.After 30 years symtoms coming back mainly in feet and knees now moving to wrist and lung nodule and decide I had blood clotting lupus anticoagulant and this was tested three times and bone erosion on toes joints.Now awaiting hand scan and ganglion on foot drained and mortons neuroma and muscles in foot weak.I also have dry eyes syndrome which they thought was Glaucoma and this is caused by umctd.I begged for a diagnoses for 5 years and finally got heard.
I'm sorry tine that you've struggled for years with lots of serious symptoms and only a diagnosis recently of UCTD. Did that also include some treatment?. I had to ask my consultant for the diagnosis as for years they didnt know how to classify me and it takes its toll doesnt it of not feeling believed?.
I specially feel for you with having foot problems because ive got similar problems with mine and am awaiting the op for morton's neuroma as the steroid injections havent cured it. Walking is so painful. How about you?.
I'm glad the diagram was helpful. Take care. Xx
Yes I am due to start azathioprine 2 times s day but was warned risk of skin cancer and to check liver and kidney regular.Yes it was frustrating when No one believed me.I have 2 mortons neuroma in right foot and one in left foot and also on and small neuropathy in feet and winter is the worst purple feet ie raynauds.I find one day joints are randomly attacked.I try to do blood tests when joints are bad so they can see u at your worst.I was told foot now collapsing rolling over.My husband just thinks itsnmade up as joints hurt all over.Any treatment has got to be better than this pain.Hope you get on ok.x
I hope tine, the azathioprine helps your awful symptoms. It did for me but i had to stop it twice because it affected my white cell counts. So yes, be very vigilant about your bloods like you have been and hopefully you'll do well on it. 🤞I'm so sorry at your bad feet, so many neuroma's, the pain must be awful for you. Ive got one and the pain is bad so i can't imagine having 3 and walking!!.
TAKE CARE. Xx
We understand! This visual representation is so good. I wish I had had it forty years ago when people thought undifferentiated meant the “doctors don’t know what is wrong with you.” It’s sort of like a picture of cake and some recipes have walnuts. some have chocolate chips, some have icing. But they are still cakes with a little this, a little that and not enough to be called German chocolate or pineapple upside down.
Glad you got a diagnosis and hope your issues are resolved soon!
XX K
Oh yes cecily, these illnesses are very confusing for us patients and the doctor's too which is heartening!. I'm just so pleased at your news lovely. No, sign of appt yet but each day/week that goes by i know im getting closer to it!. Have a good rest of the week. Xx
Thank you so much. I hope that your appointment comes soon xxx
Thanks so much cecily. I'm keeping 🤞it does. Xx🤞💕🤞🙏💕🌈🍀💐
hi Misty14 thanks for posting this. I’ve been diagnosed with UCTD and have various symptoms throughout these other groups but my rheumatologist won’t accept the gastrointestinal problems under this banner and says it’s something different. I’ve had an ultrasound and scope down there that shows nothing but I still feel a lumpy type thing on my stomach side at all times and feel uncomfortable each time I swallow but knowing it could be this is a bit stressful as docs think I’m making it up . Feeling frustrated
TillyO - Just because the doctors don’t have answers does not mean they think you are making it up. Not everything is seen on scans. I have had tons of GI tests. Because I have dysautonomia they suspect the gut issues are related. But it is impossible to know.
Just ask straight out what they suspect. My official diagnosis is IBS and slow transit.
Feel free to share your symptoms. Many of us have stomach/gut issues.
XxK
I'm sorry tillyO your having gastro problems that your Rheumy won't acknowledge. What does he think it is did he say?. Are you on any treatment for your UCTD?. I can so understand your frustration specially as your tests have come back normal. Its awful not being believed. Are you still under gastro care as there are lots more tests you could have to try to figure out whats causing your symptoms. ?. Have you had the Endoscopy for stomach for eg?. Usually too it's more common for Lupus to cause IBS because of the stress and worry of having a long term condition. Would you say you've got more lupus symptoms or more scleroderma symptoms from the chart?.
If scleroderma, then their website is full of useful info sruk.org.uk. it can affect the gut in many different ways. Your gastro should have good knowledge about these conditions.
Hope i've been helpful and you find out whats going on soon. Xx
thanks for the reply. I had an endoscopy and ultrasound for gallstones which I knew it wasn’t that. Rheumatologist just says go to gp and start again which I did until severe headaches took priority. I’m waiting on pain clinic referral for this and on carbamazepine for. Ref UCTD I’m on hydroxycholoquine daily which helped raymauds a lot. I have a wide selection of symptoms but no skin problems. I get fatigue mild joint problems, neuralgia ,dry eyes and mouth but I’m lucky none are severe and I work from home so easily managed. I want to get my headaches sorted before I start again on my gastro issues. Thanks again for the chart and wish you well x
That sounds like a sensible plan TillyO. I'm glad the chart has helped. Im sorry your waiting for a pain clinic referral for severe headaches. They are tough to live with and the pain clinic can do injections for these to hopefully really help. Can't the waits be long for help?. I hope you hear soon. I'm waiting for upper gastro surgeon referral as get awful digestive pain after eating!. Had lots of tests like you, no gallstones!. Glad you've had gallstones ruled out.
Also im glad hcq is managing your UCTD symptoms. Its true your gp can prescribe drugs to help if you've got IBS. The hardest thing is finding out what these symptoms are and why they're happening so they can be treated. 🤞you hear from Pain Clinic soon as your stomach problems could be being caused by the stress of the headaches couldnt they?. 🤞 . Take care. Xx
I hoping for injection for headaches as don’t like taking the carbamazepine but I know there are people much worse off than me so can’t complain. Good luck with your referral hope you get sorted soon x
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