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?

Can you talk to the National Rheumatoid Arthritis Society? They have a fabulous support hotline staffed by specialist nurses and it helps them draw up a picture of where the good /bad provision is.

Yep, I could talk to them.
The whole time from when I first felt unwell has been a fiasco, frankly.

@RobertSmithsLipstick

Yep, I could talk to them. The whole time from when I first felt unwell has been a fiasco, frankly.

Unfortunately, the NHS is on it’s knees a.t.m. Massive demand and insufficient resources.

The only way you will resolve your condition is by taking control. You need to be presenting your symptoms clearly (keep a diary of everything that is going on), asking the right questions and not leaving a consultation without answers.

My Dad was a doctor and he impressed on us as children, that Doctors are only human, they are trying to help, but they only know what you tell them and can’t know what your questions are unless you ask them.

Asking the right questions is about being fully informed. Read up everything you can find in relation to Autoimmune conditions. Question yourself as to whether that is what you are experiencing and formulate your questions to your GP / Rheumatologist so that you can get the advice or support you need.

Also don’t be afraid to say to them that you need more help as you don’t feel anyone is currently on top of the issues you are having.

@RobertSmithsLipstick

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.

Does your hospital do patient transport? A lot of them have a minibus that goes round and collects patients for appointments/ treatments. You might end up waiting a while in the hospital before/ after your appointment but here they are free which could help with the taxi costs?

I'm sorry you're going through this.

I have no words of advice as I'm only at the start of my journey with rheumatology - my GP made the referral to them over a year ago - despite being triaged as "urgent", I only yesterday I got a letter to invite me to make an initial appointment.

I'm in pain and discomfort most days. I'm trying to remain hopeful that this will improve with treatment, but already feel demoralised by the wait

I don't fit the criteria for hospital transport apparently.
I've asked a number of times.
I'm just a woman who is off sick from work on the face of it.
That is how I'm being treated, although I can't now stand for longer than a few minutes at a time.

This is awful OP.
I had help from PALS, my MP and my GP.
PALS and my MP got me an appointment when I had been passed around the houses by choose and book for months. I am a nurse and I knew that the most serious diagnosis to be excluded was brain tumour, so I was pretty desperate.
My GP did a referral to a different neurologist when mine retired and I was left with no follow up for a year.
My advice would be that phone calls are a waste of time.
A diary of symptoms and the progression/deterioration with dates, appointments, medication, pain scores is vital.
Everything must be sent to all parties in writing.
It takes a bit of work, but it is really important.
My spread sheet went everywhere with me. I asked for print outs of every blood test, all documented clearly. I gave copies to every doctor I saw. To be fair, they were all grateful because it saved so much time taking history.
We have a saying in the NHS that if something is not written down it didn't happen.
Having a chronic illness is, sadly, a full time job.

Meanwhile, have you had your vitamin D and B12 levels tested? I have a neurological condition as well as a rheumatological condition, but my vitamin D level was seriously low and made all my symptoms much worse.

@RobertSmithsLipstick

I don't fit the criteria for hospital transport apparently. I've asked a number of times. I'm just a woman who is off sick from work on the face of it. That is how I'm being treated, although I can't now stand for longer than a few minutes at a time.

Posting in sympathy.

I had to see many hospital doctors and go though many tests and three neurologists (one several years ago) until the 'there is nothing wrong with you' turned in a rare neurological diagnosis. Like you I could barely walk a few steps and the pain/tiredness.

It is awful having to battle on whilst being so sick, it is so hard. I really hope you get answers soon. (((hugs)))

Ah, thanks all.
It really helps bouy me up to get some sympathy!

Yes, my vitamin D is low, as are my platelets, but as my liver is pretty well buggered, I expect it isn't able to keep things on an even keel now.

Maybe a rheumatologist isn't the right person? Surely a haematologist should look at the platelets and a liver person look at your liver? Are you taking vitamin D supplements? What does your GP think? GPs can do short telephone consultations with specialists for initial advice based on a history and lab results. They can get advice regarding the best referral/action route. I am very concerned about your inability to stand or walk. Do you have back pain?

Yes, it's quite possible the rheumatologist is the wrong person.
I was referred to him because of ongoing pain, swollen legs, sore eyes etc and my gp (and an inpatient time in hospital) being unable to pinpoint what was wrong.

Unfortunately, the hospital discharged me without informing me that a scan had shown liver scarring)

Possibly this could have been liver related right from the outset, or maybe I have multiple but unrelated issues.

I do have arthritis (mild, apparently) in my spine and pelvis.

I then had an eosophagal bleed a few weeks after discharge, and was then told about the scarring.
My gp claimed to have no record of the bleed so sent me for another scan, and I have since had another one, plus a ct scan.

I have spent months waiting for an appoinment, only to find I had been referred to the surgical dept instead of the hepatologist, and had to put in a complaint in order to see the person I need; a liver specialist.

Yeah, I am taking vitamin D.
All through this, I have been attending the rheumatology appointments, but am wondering if it is worth continuing, as it may even be "barking up the wrong tree".

I have sent you a pm OP.

Thank you.
Will go and look now.

Do you mind me asking your age OP?

Late 50s.
It's just that a feel about 150 since the start of my "troubles".

I love your username.

Ah yes same age as me. You remember Benny Hill then!!

I have psoriatic arthritis. I have had it many years. It is well controlled with drugs.

BUT some of the symptoms you describe are associated with the menopause and for some women they can be debilitating. The dry eyes, aches and pains and hair loss resonated with me in particular. So my question is - are you on HRT??

No, I'm not, due to familial breast cancer .

I went through the menopause in my mid 40s, with hot flushes and headaches being the only troublesome symptoms.

I've made threads before, and been told that a lot of autoimmune conditions have overlapping symptoms..
It's just so frustrating, though.

I honestly didn't realise how bad these things can be.

Now been told that the gp has no paperwork relating to the ophthalmology appointment, including a prescription he was asked to do.

I feel like giving up with it all!

Ah I see. Yes many overlapping symptoms but as I understand it hrt may still be suitable. Might be worth running it past your gp. Sorry you're having such a rough time and hope you get some answers soon xx

Thank you.
I live in hope. X

@RobertSmithsLipstick

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.

Why do you feel ungrateful for receiving sub standard care/treatment/assessment?

Stop feeling ungrateful and advocate for yourself.

I have chronic illness and I know it's really hard when you feel so unwell but you need to start getting angry to fire yourself up for the advocating! You need to access a different rheumatologist (and keep seeing different ones until you get the care you need). Complain to PALS or go back to your GP and explain what you have said here and that you need to see someone else.

I do get angry, but I'm too exhausted and unwell to keep stoking the fires if fury most of the time.

I feel defeated by it all.
It's been almost 2 years, and my I don't even recognise myself anymore.

Have you tried talking to the rheumatology nurse? They are specialists and often better than doctors at dealing with patients. She may be able or willing to explain better.
Sounds like they should at least be giving you a general steroid?