Has anyone given up on seeing a rheumatologis? t

[RobertSmithsLipstick]

I feel that I just go along, he orders blood tests, and doesnt explain anything much.

He did tell me that my eyes weren't dry, which has since been proved very wrong, as I have had to have an emergency ophthalmology appointment, been told that my eyes are extremely dry, and they are scarred a.d pitted through not being treated appropriately.

They asked if I have an autoimmune condition, in particular sjogrens, and said that is how they are going to treat my eyes (as if I do) as they are quite certain i have it.

It was ruled out by the rheumatologist, on the basis that my eyes arent dry.

I feel it's all becoming a waste of time, really.

Would I be daft, though, to call a halt to the rheumatologist visits?

How did the rheumatologist try to establish that your eyes are dry or not dry? Have you told him what the ophthalmologist said?
I would put in a complaint against him.

Are you seeing the consultant or a junior doctor? Ask to see consultant

He put paper strips on my eyes to check for dryness, and said that one was dry, one was fine.
He is a consultant.
I have all kinds of issues, which I assume are autoimmune related; a rash, hairloss, dry mouth, aches, pains and other stuff, and my health is rapidly deteriorating to the extent that i now have liver issues (serious ones)

He suggested counselling last time i saw him, and i was quite stunned and ,offended. (Perhaps wrongly)
I have a whole host of very real physical problems which are getting worse and worse.

Get a second opinion. The current one is clearly useless.

I havent seen him since my eye appointments, but far from them sorting out my eyes, I am now going to be having regular appointments with the eye clinic as they arent healing as expected, and my vision is much worse as a result.
It is also two different hospitals I'm going to, which is a pain in the arse.

You could ask for a second opinion? You could ring the hospital for this or if not ask your GP

Thank you.
I'm aware that I have been lucky to have regular appointments all through the covid situation, but I have no idea what I'm even seeing him for anymore.

My rheumatology department is fucking crap.

If I had the mental energy I’d complain.

I suppose I had imagined the rheumatologist as "the man" in terms of sorting out my problems, so I feel ungrateful, but I can barely walk now.
Have been housebound since last summer, and collapsed on my way home from my last rhuemy appointment.
Ended up back in a and e in the same hospital.

Are we entitled to ask to be seen by a different hospital, do you know? I can’t face going back to mine.

I was wondering that, too.
Asking if I can transfer to the hospital where my eye and now liver problems are being dealt with.
Killing two birds with one stone.

Ask your gp to refer you elsewhere for a second opinion. Contact the RA uk society and ask their advice. Your rheumatologist sounds hopeless.

You feel ungrateful because the rheumatologist has failed to investigate your situation properly . Angry, disappointed or upset I could understand, but ungrateful?

Sorry it is NRAS I think.

Well, I'm of the "do what the nice doctor says" generation.
It's a hard habit to break, even when the nice doctor seems to be not doing anything much.

I sort of imagined all these blood tests would lead to an "Aha!" moment, in terms of what's wrong with me.
Imagined I would go one day and be told he had it figured out.

I imagined my rheumatologist appointment would result in a thorough investigation. Not a cursory glance, an attitude problem (her) and a misdiagnosis. We live and learn eh.

I'm going to phone that helpline and get some advice, by the way.
Thank you.
I'm so worn out with it all I cant see the wood for the trees., so it really helps to have some input.

Definitely get another opinion. I know it’s not always an option but could you have a private consultation? I did that whilst waiting 13 months to see the same rheumatologist on the NHS but was worth every penny to get started on the correct meds.

My rheumatologist is great and does virtual or phone appointments, happy to share the details.

@BlueSummerBaby
Don't we just.
I've never dealt with rheumatology stuff before, so it all seems a bit of a mystery to me.

I wish I could get a private appointment, but it's not an option for me right now.
Its costing a fortune in taxis to all these appointments, because I can no longer even walk to the bus stop.

I onow someone who had a terrible time with a really dreadful rheumatologist and eventually transferred to a different hospital and got a proper diagnosis and treatment. The first woman was just really nasty and took offence because the gp had the temerity to suggest a diagnosis.

Namechanged for this as outing to anyone who knows me.

I think the problem you are facing is that Sjorgrens seems to be a poorly understood and minimised condition, even amongst the medical profession.

You may have Sjorgrens with those symptoms, but typically the dianosis takes years (three years for me). Even then I am often challenged when I explain how seriously some of the symptoms are impacting me.

My Rheumatologist is OK, but always goes straight to drugs when new symptoms appear, rather than discussing other options or ever explaining how this condition has arisen and the full gamut of symptoms to look out for. As I understand it the Drugs he offers will relieve individual symptoms but not stop progress.

My GP on the other hand is amazing. She diagnosed it in the first place, understands my desire not to drown in drugs (all with their own side effects), provides a battery of topical treatments for my eyes, mouth etc and helps me understand what I am dealing with.

My other sources are the internet and a couple of support groups. One on FB (Sjorgrens Support), one on Healthunlocked.

Although I am cautious about support groups I have learned a lot, about the nature of the condition, how it flares and presents. Most of all I have come to understand the true extent of the minimisation that goes on in the medical profession around this condition. I don’t think that is deliberate, just that it is poorly understood.

I now know that what I am experiencing as serious symptoms during a flare is not ‘all in my head’

Three years on my Sjorgrens is fairly well controlled. I use Eye drops during the day and stronger ones at night. I have mouth drops for when things are bad. I use SVR lotions / creams to deal with my skin issues and a controlled Gluten, Sugar and Dairy free diet to deal with the stomach & gut issues. I would say it is the diet that is the most beneficial. If I stray, I often trigger a flare.

My advise would be to arm yourself with as much information as possible and challenge your Rheumatologist to explain full what is going on, the full range of symptoms you may experience and how you can obtain relief.

If he cant or wont, ask your GP for support in having you referred to someone who specialises in this area. I have read that Dr Elizabeth Price in Swindon is very good.

Mine is quite nice and smiley. .that's obviously had some bearing on my thinking he is trying his best.
Now I have the question of was it my liver all along, too.
Either way, I'm in a hell of a mess, despite all the input I appear to have been having.

My gp hasn't been very supportive either I'm afraid, and I had to put in a complaint to the hospital in order to see a hepatologist about the liver stuff.
It's almost broken me, mentally, and it has, physically.