Undifferentiated autoimmune disease

[RobertSmithsLipstick]

At least, I think that's the name for it.
As it stands, it is what I have, and it has torn my life into pieces.

As far as I know, it is multiple issues, but not enough like any one kind of auto condition to say "Yes, it's that one".

Has anyone else been diagnosed with it, please.

It apparently is a recognised diagnosis in its' own right.

Coeliac disease???

I'll check that out, thank you.

It's all so complicated, I looked at ehlar danlo and it said there is 13 different types!

I'd echo the pp that a lot of those symptoms chime with low b12 - pernicious anaemia is the autoimmune cause of that and very often takes a long time to be diagnosed.

Thank you all.
More to research now.
I'm desperately hoping to find the key to all of this.

@RobertSmithsLipstick - yes… Most of the scarier types are pretty damn obvious. (You’d have excessively scarred or wrinkly skin from a young age.) The hypermobile type (the name is a bit misleading) and the next one up are the sneakier ones. They go undiagnosed for a long time. Can have gastrointestinal issues, skin problems, hair issues, eye problems, issues with temperature regulation, joint pain (clicky, painful joints very common, so are ganglions.) Dry mouth/eyes, sometimes crumbly teeth, sore tongue, itchy, dry skin, painful, heavy periods, etc…

Yes, I started reading about one that can affect internal organs.

The thing is, there is such an overlap with all of these conditions, isn't there?

It's a rabbit hole once you start doing a bit of finding out.

No wonder people are furious when its suggested or hinted its "all in the mind".

Unfortunately I think that autoimmune problems tend to gather friends. It’s your own immune system going into overdrive (panic-stations) and attacking your own body systems. Nobody really fully understands why or they’d be all over it. They used to think that these were the domain of the post-menopausal woman and were labeled “hysterical woman syndrome” because these poor women felt so bloody terrible. Luckily we’re listened to and valued a little bit more now.

You're right about the gathering friends!
Every single condition/symptom that has been mentioned, I have!
The crumbling teeth and bleeding gums is one I hadn't considered, but I have lost 5 teeth in the last year.

Sjögren's syndrome also causes dry eyes and dry mouth which leads to tooth loss.

That was one of the first tests I had.
I was convinced it fitted the bill.

@RobertSmithsLipstick - it is usually because of the dry mouth, but also because of the connective tissue problems underlying the teeth also. Some people with EDS also have a genetic pattern of missing adult teeth. (They simply didn’t make them.)
A lot of doctors simply don’t believe in EDS. Rheumatologist will probably have thought along those lines.

It was the practice nurse and me that thought it may be sjogrens..
It feels as if everything is a battle to be heard!

Honey, everything autoimmune is a jigsaw puzzle. Definitely worth bringing the EDS question to the table.

Thank you.
It has helped to connect with people who understand, even though I still feel like absolute shyte!

I am sorry to hear that, not knowing is so difficult. At least when you have a name, something to call it, it makes the process easier.

When I read your post, I immediately thought of Sjogrens & lupus. I have both, they overlap each other. I've been prescribed hydroxychloroquine which helps control the flare ups. I also have rheumatoid arthritis. The joint pain, fatigue, rashes, gum issues absolute smack of sjogrens & lupus. Symptoms just pop up when they like for no good reason. I've been known to sleep for 16hrs due to being so exhausted! Hang in there. You're in good company x

What kind of test have you had on your liver? I've recently been diagnosed with cirrhosis of the liver, I don't drink alcohol so they think its damaged because of an undiagnosed autoimmune condition. So far they have ruled out all the hepatitis, the one with too much copper in your system and a few others. My liver damage never showed in blood tests, they were always fine. I've been told any kind of bleeding from my oesophagus needs medical attention.

My dad had this. He was right as rain one day and the following day was very ill. Spent six months in hospital and never got a diagnosis. He was referred to Addenbrooks which is meant to be the specialist place and then sort of got a diagnosis but not really. They’d say well it’s a bit like x, but then this symptom and that symptom don’t fit……and it’s also a bit like y but this symptom and that one don’t fit.

I remember the consultant there saying that however many years ago (fairly recently) they only knew about 30 different auto immune illnesses, and now they know about 80 but there’s probably hundreds. (I might have the numbers slightly wrong).

Dd has a couple of auto immune illnesses and she has other symptoms which I suspect are auto immune but not related to her POTS or coeliac. They’ve also diagnosed her with fibro which I think now means everything gets blamed on that. 🤷‍♀️

@LiveintheNow

Sjögren's syndrome also causes dry eyes and dry mouth which leads to tooth loss.

Was just about to say that. My dad had inflamed and dry eyes and this was one of the diagnosis they banded about. He had a lot of your other symptoms as well, including the leg swelling and tiredness. Rashes, joint pain, terrible headaches. Pins and needles, breathlessness.

Sarcoidosis is a possibility - it can affect any organ but most commonly the lungs and skin, but also the liver. If you Google sarcoidosis skin you can see pictures of the lesions it causes. It can also cause reactive arthritis. It’s worth checking out lofgrens syndrome as well. If you have it in your lungs (it causes breathlessness) it can be diagnosed by chest X-ray

Hi all who have commented, and thanks.
I didn't realise the thread had extra comments on.

Someone asked what tests I've had on my liver - soon it will be a ct scan, although the last ultra sound showed cirrhotic changes and an enlarged spleen.

I don't know how much longer I can keep going like this.
I feel so, so poorly.

I now have a swollen lymph gland in my neck (well, not "now", have had it for ages and been told it's probably as a result of all my other ailments)

I am having nose bleeds, bum bleeds, have hair coming out in clumps, and feel like giving up.

Oh, and I have also had a gastroscopy, which showed 2 eosophagal varices.
One of those bled, I had to take myself off to hospital, queue up to get in...
Losing hope, really.
I don't know what is causing what, what might be a side effect of something else.

All I know is that I think I need to be in hospital.

Have a look at vasculitis as a possibility...there are several manifestations of this but it sounds like it could be bechets or granulomatosis with polyangitis (GPA)
You need a referral to rheumatologist for more specific tests ...vasculitis it notoriously difficult to diagnose and can mimic many other diseases
www.vasculitis.org.uk/
The vasculitis charity helpline can help with finding a specialist as well as offering advice and support