Autoimmune disorders - eye symptoms

[littlemermaid]

Severe conjunctivochalasis in association with classic-type Ehlers-Danlos syndrome I wonder how many people have chronic eye trouble caused by systemic disorders which are not diagnosed or investigated for? This poor patient was eventually found to be positive for Ehlers-Danlos. The collagen disorder wrinkled the conjunctiva (conjunctivocholasis) with dry eyes. The eye docs were all too ready to fix the cornea, but had not asked about symptoms in the rest of the body. Respect to them, that they are pointing this up for the rest of the trade 'Conclusion: This highlights the need for direct patient questionning...'

I think we kinda assume eye docs are interested and up on systemic disorders. Some are not and cut me dead on skin problems and joint aching and obvious vascular/cerebrospinal fluid problems, even when the child is sitting there with keratitis and flared up rosacea correlating with immune and endocrine triggers. Unfortunately, when it's a fail, we all struggle on trustingly fixing eyes and other parts of the anatomy with drugs like steroids, immunomodulators, antibiotics, that may be adversely affecting an immune disorder. (This is one reason why we are very careful to close the tear ducts after using eg steroid eyedrops just in case it helps.)

It is very difficult to get referral for immunology investigation in UK because of ignorance on symptoms, which may be mild in some parts of the body and severe in others and each specialism only does their bit. Ignorance is boundless and now we have NHS rationing on 'unnecessary' referral and the usual caps from private insurance schemes. Eg why do you want Rheumatology? She doesn't have arthritis and it's not a lupus rash. Refused. Many of us are paying a lot of money now for testing and investigation of autoimmune disease (if anyone is dealing with this, some solutions are: seek out lead docs who are setting up specialist clinics and attracting research funding, coordinating the specialisms; www.raredisease.org.uk/; Googling patient forums; plus the NHS website is more current than your GP).

Dermatology is particularly awful on this - you would assume they dealt with and diagnosed skin manifestations of systemic disorders all day every day (psoriasis, vascular, lymphatic, infectious disease, immunology, autoinflammatory). Time to shake off the 'dermaholiday' label

[Guest]

Good post - I can relate to much of what you're saying - we have a public health system here too, which is maybe similar to yours?

Anyhow, unless you're "dying" it can be really tough here also to get a referral to a specialist for investigation of these systemic complaints.

Heck, I have a friend who literally will die decades early because of an autoimmune disease she has, and she was only diagnosed because she researched it and told her GP what tests to order, and when the tests were positive, she still had to convince her GP for a referral to a cardiologist, but had to wait several months (and an earlier appt. could have been very helpful to slow the progression of her disease, but no-one cared enough to do anything about that). There is one rheumatology doc here in the city who has a real interest in her particular disease, and her GP wouldn't refer her - she only got in because she ignored protocol, went to the rheumagology doc's office in person with no appt, and after much convincing, got the receptionist to forward her letter (which detailed her case history, symptoms etc) to the doctor - after seeing her letter, he was happy and more than willing to take her on as a patient, so that was wonderful. But the fact that she had to go through all that to get access to him is terrible. It's pathetic and sad really...

[spmcc]

All this is SO true. I was just watching a TV program on MS and CCSVI. They said in Canada that one reason why it was so difficult to get even one clinical trial started was because neurologists wouldn't coordinate with vascular specialists. The crux of the problem, they said, was that doctors work in silos now... everyone is too specialized.**

Personally I'm experiencing exactly this. I can go to my dermatologist and she isn't the least bit interested in my mouth or eye problems. My cornea specialist has nothing to say about my eye problems being connected to my skin or mouth. And the same for my periodontist. And these are each doctors I have seen for 18 years. It astounds me that no one cares (in a medical sense) or is interested enough to say or do anything even after all the repeated visits wrt the same advancing problems.

And I get so tired of fighting for myself. But I simply can't choose passivity. So I keep going to these dead-end appointments. Where is this mythical beast, the-doctor-who-actually-knows-something?!?! I'm convinced that he/she doesn't exist, and so now medicine requires that the patient have/get a medical degree in order to help themselves.

** of course, there are also vested interests, egos, etc.