It's been so tough getting a referral I'm now worried I'm making it up..

[dodofofo]

I'm currently suffering real imposter feelings right now that my long awaited appointment is looming. I'm being seen next Monday and all of a sudden I'm scared out of my mind. My Docs have implied every symptom is due to depression for years.

For the past 13 years I've been experiencing allergic rhinitis, bowel issues, joint pain and stiffness, eye problems (I think iritis/uvitis?), psoriasis, brain fog, urticaria, rosacea, food sensitivity, temperature regulation problems, intermittent bouts of insomnia, Reynaud's, painful lumps (hidradenitis suppurativa), hair loss, painful bumps in my hands and feet, nail loss, fatigue, swelling, headaches, vertigo, gum inflammation... all sorts. I got bored writing this so sorry for having to read it.

My ESR & CRP increase each time I'm tested and are always "just" out of range. My ANA was negative & all auto screening came back fine apart from a rheumatoid factor of 138. My Thyroid function was deemed fine, except TPO of 118. Despite out of range RF, TSO, ESR & CRP, my doctor said "it's of no clinical significance."

I complained out of desperation because I have no social life, my work is impacted, I can't work properly, I can't have a normal relationship with my husband, I can't contribute to anyone or anything, I can't do anything. My GP sent a snarky letter referring me stating "She feels she would benefit from referral despite my suggestion she is dealing with a neurological condition. I will appreciate if you can see her but I understand you have long waiting lists." Perhaps I'm reading a tone that doesn't exist here but I feel completely jaded after years of begging for help. I've tried to do everything myself where my doctors wouldn't help. Elimination diets, regular physio, cutting gluten/sugar etc.

If you're still here, having read my symptoms & information, do you think I'm barking up the wrong street? Being anonymous here makes me feel like I can handle strangers telling me to get a grip for some reason!

It’s worth seeing a specialist- I’d suggest that before you go to make a list of symptoms, so you don’t forget, but really prioritise the discussion over symptoms that are dominating your life, rather than listing off 20 things. The blood tests result sound a bit non specific but rheum will be familiar with interpretation of them. Good luck

Thank you! Good point, I think I need to spend some time making proper notes. Winging it probably won't be a good idea...
I think I've possibly taken my doctors notes more personally than I needed to but it's hard where I feel so completely awful.

You've got Psoriasis. So you definitely have an autoimmune disease. A poorly treated one, by the sounds of it if your nails are being affected as well.

Psoriatic arthritis is a significant possibility - particularly in relation to the swelling and joint pain - and this can affect multiple systems, cause neck pain/headaches/dizziness/vertigo - and make you feel like absolute shit. Whilst not having a cut and dried test to say yes or no to it. Rheumatoid arthritis, ankylosing spondylitis and any number of others are also possible (Raynaud's can also be common).

I would suggest that in your appointment, you would make a point of noting your existing Psoriasis diagnosis and, in conjunction with RF, ESR and CRP being elevated that you wonder whether the possibility of PsA or another related autoimmune condition could be causing your issues.

I'd also suggest that you ask if it could be possible that they consider trying an intramuscular steroid injection at the appointment, as responding to it might support the theory that it is autoimmune in nature whilst also giving you some relief in the meantime.

The reason I'm suggesting it like this is whilst your GP is clearly dismissing things as being 'all in your head', it's a less confrontational but politely assertive way of encouraging them to actually do something - coming back to your Psoriasis if you feel they are veering towards the catch all of fibromyalgia at each point.

'Well, the brain can make people think they're in pain/the nerves can get trapped in firing off pain....''Yes, but in view of the fact that I already have an autoimmune disease/Psoriasis...'' '

'Rheumatoid Factor doesn't mean that you have...''I know, but as I already have Psoriasis, I know the likelihood of another condition such as Psoriatic Arthritis is increased'' '

'Have you heard of something called Fibro... ''yes, but that wouldn't explain my consistently elevated C-Reactive Protein and Erythrocyte Sedimentation Rate, would it, especially taking into account my existing Psoriasis diagnosis, but perhaps something else autoimmune could?'' '

Or you could get there, they take one look at you, see swollen fingers and toes, poke fibro trigger points with little response but send you skywards when touching a tendon insertion point, and reassure you that no, it's never been all in your head and start you on proper treatment.

The clinic letters to GPs treating their patients as yours have done used to be absolutely brutal once you read between the lines, by the way - I've typed some in the past where the response was 'thank you for referring this delightful lady to me with what you felt was all in her head x. She presented with symptoms of....clearly indicating a diagnosis of....'.

Please don't mistake my lack of response as anything other than "WOW.", thank you. So much to unpack and digest there... really helpful!

A specialist with a long waiting list isn't going to accept the referral unless something in the referral justifies a specialist appointment.

So despite the fact that the referring doctor seems sceptical, the specialist has seen what's been written about your various symptoms and diagnoses, and decided you need to be seen by a specialist. I'd go with that as a vote of confidence that, whatever happens, getting this referral was the right thing to do.

RF of 138 along with that constellation of symptoms is more than enough reason for a referral (GP here, OP). I'd have no fears about the constant not taking you seriously. Hope all goes well.

Headband & Appropriate (sorry I have no idea how to use MN!) thank you both for reassurance. Especially reassuring coming from a GP!!

I was referred to rheumatologist by a GP not really sure what to do after sending me around other tests! I already am coeliac with psoriasis. The rheumatologist equally wasn’t sure but kept seeing me as CPR and ESR went up and kept trying different tests and now I’ve just had a Pet CT scan which has returned a clearer picture. My symptoms have been a lot vaguer or harder to pin down than yours, but that’s the nature of some illnesses and particularly auto immune ones I think.
Hope things start to get resolved and never feel like an imposter - there is obviously something going on and auto immune disorders mainly don’t stop nicely at just one or be clear cut in presentation.

My first ever post after years of reading Mumsnet, but your post really resonated with me. After years of similar sounding symptoms to yours my husband was eventually admitted to hospital when things got really bad. A doctor friend suggested he might have EGPA, an auto immune illness. Your symptoms don’t sound quite the same so I’m not particularly suggesting that for you. Two separate consultants (the A&E one and the respiratory one) said my husband could not have this as ‘It’s very rare’. Eventually he was diagnosed - with EGPA - and is now receiving excellent treatment which has enabled him to reclaim his life. Don’t give up, OP! Keep fighting for a diagnosis.

Do you have family members with other autoimmune diseases? That can sometimes indicate what you may have e.g. I have Hashimoto's and coeliac but other family have type 1 diabetes and addisons. TPO antibodies could indicate Graves or Hashimoto's, both autoimmune thyroid disorders. Coeliac has myriad of symptoms not always obvious e.g. skin rashes such as Dermatitis herpetiformis and neurological symptoms.

Thing is he says neurological? What does he mean by that? That’s not the same as psychiatric.