So many autoimmune diagnoses but no root cause. Where next?

[diagnosisdisco]

Hi All,
A bit of history, over the last 20 years I have been diagnosed with what I consider a ludicrous number of health conditions, including but not even limited to:
*Psoriasis Arthritis
*Rheumatoid Arthritis (worst affected are wrists, hands and feet - I'm also hypermobile, not ehler danlos, but unusually bendy for someone arthritic, and my Arthritis is migratory... so within 24 hours a flare in one joint will move to the other side of the body.... which makes me look very odd because people say things like... weren't you limping on your left foot yesterday???")
*Coeliac Disease
*Crohns Disease
*Diverticular Disease
*Sacro ileitis
*Polymyalgia Rheumatica
*Limbitis (inflammation of the limbis of the eye)
*Epilepsy (focal eleptiform discharges)
*Dupuytrens Contracture (multiple fingers, apparently a quite remarkably bad case)...
*Bilateral benign lung tumours
*Bronchiectasis
*Asthma
*chronic obstructive sleep apnoea

I could go on because there are more.... but you get my drift. It is pretty debilitating, and I am probably the most ableist disabled person out there because I actually feel embarrassed listing it all off when anyone asks or I see a new doctor...
Now I'm not actually looking for a cure.

A few years ago I got put on rituximab and frankly it's been life changing for pain management and disease control. I also love the roids and naproxen.

I've also gone vegan and I'm convinced this has helped with inflammation, but im not interested in trying to convert or save anyone else, it just works for me.

However... listening to radio 4 recently I pondered on how many different specialists have diagnosed me, and they all stay in their lane. They have all been excellent (i have experienced great kindness), but gastro isn't interested in joints, joints not interested in urology and so on.

I feel like, OK maybe I am just the greediest autoimmune person out there, but it's one body, one bag of bones and fat and inflammation and I really want to see one specialist who will take a holistic view and consider how it links up.

Now I get enough from the NHS already, and I'm grateful, I know it's a big ask for a review especially when I am delighted with the results of my treatment, so I want to go private. Fully committed to putting some savings behind this.

AiBU to ask if anyone could recommend a doc who would see me to have that, almost academic discussion about the whole picture and how it hangs together.

Reading widely I'm wondering if I might have an overarching condition like lupus, and I imagine if it was something like that, absolutely nothing would change for me... other than a better understanding... and that's important to me....

Anyone else going though this? Appreciate anyone's thoughts.

Sympathies, OP. I have type 1 diabetes, Crohn's and underactive thyroid (and a few other minor ailments). I've also been treated well, but I do hanker for a multidisciplinary team overseeing autoimmune patients, like I had during my diabetic pregnancy. Hopefully, research continues to develop.

As a vegan, are you eating as clean as possible? Inflammation seems to be linked to processed food and sugar.

This will be completely against your current ethos and it might have no foundation whatsoever but, in my search for getting healthier, I’ve come across a fair few accounts of people improving their health from autoimmune conditions by going carnivore.

Thanks for taking the time on this. Interesting stuff in going carnivore. I was eating meat because as a coeliac, it was easier but unusually realised that dairy, eggs and bizarrely Chicken made my guts much worse, so over a period (quite recent) I gradually transitioned. I cook everything from scratch so I know it's clean and I know it's unprocessed. Sugar definitely causes me issues, but if I eat things like dates I have no issues. I recently had a remarkable colonoscopy which showed my crohns appearance to be in remission, do I'm going to stick with vegan for the time being. Heartburn has completely resolved with this WOE and the solid poops have been a revelation after years of pain and bleeding. I also love turmeric and ginger in everything... I'm trying it all!

So yes, not looking for new solutions necessarily, but i so want to have a good discussion about how it all links together and whether I do have ALL the diagnoses, or actually just one thing that manifests across multiple body systems....

I appreciate you taking the time to comment. Thanks a million!

I yearn for this as well - I have some of the same conditions as you although you beat me by a country mile - and it feels really difficult to get someone to look at it in the round. I've currently been struggling with a bizarre and debilitating virus for the last month or so and while my, excellent, GP and, indeed, the doctors in A&E have been great at treating the symptoms as they present themselves, I feel certain that it's actually part of a bigger whole. My current cocktail of steroids, NSAIDs, anti-histamines, antibiotics and biologics helps with elements but there's nobody is interested in thinking about it more broadly and what interventions will actually make a difference

It sounds really tough and I hope you find a way to recover or go into remission but it’s good you’re trying things yourself. I feel that’s often what people have to do because holistic support isn’t always there and not everything works for everyone, but may help some.
all the best op.

I hear you!

I hear you OP. I've just been re-watching House and thinking I need someone like this to look at me as a whole and work out WTF is my underlying problem - they can be as rude to me as they like as long as they get the required results!

Bloody hell, op! Sympathies

And I completely agree that greater collaboration and cohesion between different specialists would be an absolute boon to patients and medicine alike.

I agree. Talked to a friend about it
recently. How my old boss went to see a Dr /clinic privately and paid quite a bit for a general MOT where they discussed loads about his life and health, all blood tests, scans , etc.

shame that it's not standard for all. Different depts not connecting the dots.

This doctor is local to me and does the kind of thing you’re looking for, I think. https://www.philiphamann.com/

Just been diagnosed with PMR and am trying to educate myself about it.
Thought it was excessive gardening.
I am on Prednisolone which has given me relief after only a few hours.
I was in agony for weeks.
I have a fab gp and private health insurance so hopefully will get to grips.
My sugar habit will need to go, not so sure about the alcohol, I do enjoy it, but definitely not too much.
Even though I am shocked, I am a little relieved as the pain was shocking and it sent me down a bit of a black hole.
I am 60 and fit and active so need that to be a part of my life.

I told the doctor fxxk it, put me on an anti depressant too as I never took anything during a long menopause and am sick of constantly lifting myself out of a low mood with exercise and positive thinking, gratitudes etc.

Definitely will be staying away from empty carbs too as steroid use and diabetes is linked.
Fortunately my weight has come down over the last year, painfully slowly, but I lost a stone and feel the better for it.
The lidt chocolate balls have got to go though!
Thanks for any tips.

I found the steroids hard. I was a combination of hyper and grumpy as hell so quickly cut them back every few days reducing the dose.
I am fully off them now and carefully listening to how I feel.
Aches are back but nothing like before.
I have ruthlessly cleaned up my diet and am 95% sugar, dairy and gluten free.

I have friends that are sending me the most up to date research and eating greens, olive oil, oily fish, walnuts, avocados, berries, vitamin C, d and magnesium, dates for gut and kefir.

I am 3 weeks in and I can feel the positive difference.
A few days after I got my diagnosis, my fore finger knuckle was very red, hot, swollen, stiff and RA looking.
That was disappointing.
But that has vanished too, I'm hoping the clean diet is the reason.

Gentle exercise, some yoga stretching is feeling good.
From my reading this is stress and inflammatory foods.
Elimination of the food and reducing the stress is key if possible.
Fasting is very helpful as it gives the entire digestive system hours of rest.

I would love to do a 100 hour full fast and am working my up to it mentally.

I am so grateful that I am mostly finding the clean diet manageable.

I hope everyone is well.

I definitely don’t suffer as much as you OP, but I do have a number of autoimmune complaints - I’ve been seeing a rheumatologist for many years and yet to receive an actual official diagnosis!!!

my biggest issue is arthritis, in fact the presentation of my arthritis sounds very similar to yours in that the affected joints change very quickly. I was told I don’t have rheumatoid arthritis, I cannot for the life of me remember why now but they said my blood results don’t match RA, and I just have unspecified autoimmune arthritis… what the difference is I don’t know.

Over the years I’ve had a number of autoimmune issues, most of which come and go. At the moment I’m mostly just left with the arthritis. When I was 17, I had about five different issues under investigation.

I’m eating as clean as reasonably possible, but it doesn’t seem to make a difference. In fact, the one time everything went away for a whole year was in my student days when I was most certainly not living a health toxin-free life!!! Other than that everything disappeared during pregnancies, but came back after.

I feel strongly that mine is somehow related to stress or specifically emotion. If I argue with my husband, my joints paint gets markedly worse within a few hours. And it’s not just pain so I know I’m not imagining it, they physically swell up in size an hour or two after an argument.

Mine was absolutely triggered by stress, worry about my son, which has thankfully resolved itself.

I believe kinesiology can be helpful as can osteopathy, both of which I intend to check out.

Stress on the body causes enormous damage.
Relationship stress being a prime example.