Ok so saw the rheumatologist: diagnosed with undifferentiated connective tissue disease. ANA positive, atypical PANCA positive and raised ESR (39).....
Whilst Im relieved this is a real diagnosis, Im frustrated - because you don't get organ involvement with UCTD apparently - but I have (separately diagnosed) problems with my heart, bowel AND kidneys, including a minor neuro issue (Adies pupil, pretty insignificant)..... I'm 28, surely NO ONE is unlucky enough to have ALL of this as individual issues AND a connective tissue disease that is not involved???!!! The main purpose of me seeing rheum was to get a unifying diagnosis and solve ALL the problems.... now as it stands my kidneys are still rubbish (which is my biggest concern) and no one knows WHY or what exactly to do??? Also I fail to see with obvious autoimmune disease and being treated for that (told I look unwell, given steroid depo on the spot, on immunosuppressants already, discussed increasing or changing these), with blood in my urine and weird ECG changes etc etc etc they have decided this has no organ involvement?!?!?! Just what the heck????!!!!! Obviously the diagnosis has an impact on prognosis, and also need for further monitoring, but uctd is characteristically less serious and therefore monitoring and making sure I don't get worse will be less important......
In better news, the steroid injection has had some effect and im feeling more myself, eating a bit more, less tired and joints are much better.
But still. I need to talk to them and find out WHY they think all this is separate when I obviously have autoimmune disease and there is an autoimmune disease that can explain EVERYTHING - LUPUS (or heaven forbid MCTD)!!!! ARGHHHHHHHHHHHHH
It really depends on what is causing your other problems There can be relatively benign reasons for EKG changes- you don't say what they are - some people just have minor changes on their EKG that really don't mean anything Same for blood in your urine- cystitis can cause that and is not autoimmune related Its easy to blame everything on Lupus- it is an anything goes illness But best to discuss with your doc so you have a better understanding
The ECG changes and blood in urine are long standing things, the ECG is diagnosed as SVT and prinmetals angina and treated. The blood in urine occurs with acute kidney failure and is termed "autoimmune glomerulonephrtitis of unknown cause".... Ive called my consultant to ask. I didn't see the consultant I saw the reg on the first appointment so im not sure she is aware of absolutely everything.... the letter would indicate she isn't.....
You can have red blood cells in the urine and it be normal- depends on amount You also can have it with cystitis and urinary tract infections. It is a fairly common finding in women.. Glomerulonephritis generally has 'casts' including red cell casts and there is a whole lot more to glomerulonephritis than some RBCs in the urine. 'Blood in the urine' is not diagnostic of organ damage and without other problems in this area you might be causing a lot of mental stress unnecessarily. You are young to have prinzmentals but this is a vasospastic disorder which may or may not be lupus related SVT can also be a hereditary or congenital disorder as well. It would do a world of good if you could have your doctor discuss with you and explain what is and what is not.
I have changes on renal biopsy too, global sclerosis with atrophy and fibrosis - that's why its been called glomerulonephritis. I just find it hard to believe that all this separate.... its not just some rbcs in my urine - my urine is red when it flares and I get severe loin pain. I vomit. I lose my appetite. My creatinine raises and my in get acute kidney failure... its not a uti. I'm under 2 renal consultants with it - neither of which know how to help further.
I do need a doctor to explain what is the connective disease and what is not, but I think given the cardiac history, bowel disease, renal disease that just isn't improving despite best efforts, it would be a decent explanation....
My husband is a doctor and has been for 6 years and he strongly believes it's all connected and it equally if not more frustrated than me that the rheumatologist isn't putting the pieces together......
I’m so sorry you’re going through all of this! I know how frustrating it can be. When they couldn’t connect the pieces and figure out what was going on they labled me with conversion dissorder! Took awhile for them finally to say SLE. My symptoms are all A typical but they still strongly believe it’s SLE. I hope you can get some answers soon. I think its harder not knowing than knowing. Praying for you and that they can get answers for you!
Thanks Louters. I cant complain TOO much, at least theyre on the right lines and the treatment is the same..... but I really wanted just unifying answers to everything ive been going through. And a prognosis. My husband is worried I have signs of pulmonary hypertension, but, and I know this sounds dumb, I don't want to see a doctor with ANOTHER thing wrong and go through more tests. He's said some of my symptoms sound like pulmonary hypertension since before the SLE/MCTD theory was made by my London renal consultant. So it all fits mctd/sle much better than uctd. I suppose for now, treatment wise it doesn't make much difference. And I know at some point I will have to make the doctors aware of these other issues, but I don't have it in me right now, I have so much going on I don't want anymore. I wanted the current 5 different diagnoses to turn into just 1 and that so far isn't happening..... :(
And it won't happen Even if your main diagnosis is lupus you will continue to have the different areas listed as separate diseases and they will continue to require separate physicians too. VERY frustrating and my main peeve- why can't I have just ONE doctor- it all originates from the same illness. I was lucky cause my kidney biopsy was a text book picture for lupus nephritis and is used as teaching slides Your biopsy as you report has multiple different causes I guess causing the confusion. But it is important for your various problems to be listed separately in your medical care as each requires different treatment and for new or emergency care it is critical for all medical providers to know. Just lupus doesn't tell the whole story Wouldn't it be wonderful if we could all just make this go away-----
:-( I'm just really fed up with this. I keep getting recurrent acute kidney failure and if it carries on my kidneys will pack in and no one seems to be able to stop it..... that's my biggest worry with all of this.
Also I want the correct name to this disease; Im not sure UCTD is - UCTD almost never affects the kidneys and only very severe cases need immunosuppressants; I've been on highest dose azathioprine for a few years now cos of the crohns and then the kidneys, and despite this Im still getting joint pains, rashes (discoid and urticarial vasculitis), hair loss, weight loss, fatigue and feeling unwell.,,,,,surely this just doesn't fit?! I know I sound like im whinging over semantics as the treatments are the same and ultimately its a real diagnosis and im lucky not to be told it "all in my head" like some people are; but I think a correct name to a disease is needed for someone to adapt to it, own it and move on and right now whilst im feeling this is wrong im lacking closure...... does that make sense?
I totally relate to your frustration. I lost a kidney and at the time no one could tell me why. I just ended up with 20 interns crowding around my hospital bed because I was “such an interesting case to learn from” grrrrr. I’ve only recently been diagnosed. I was having issues with my one remaining kidney. But since being put on the prednisone and hydrocloraquine my last tests have come up with great kidney function. Keep pushing for answers. I really hope they sort it. And I hope your kidneys return to normal function. I know how frustrating it is. Hang in there. I have a new mantra now- two kidneys are a luxury, ones a necessity. It what I tell myself to make myself feel better about being misdiagnosed and loosing one in the process :o(
Big hugs all the way from New Zealand.
Shell xo
Crohn's is a nasty autoimmune dz too and can also cause joint pains. Many times our disease evolves over time and is indeed very frustrating. Not sure what your kidney dz is - have you ever been on dialysis? All we can say is hang in there- answers will come in their own good time
