Notes for upcoming GP appointment

[Wispymisty]

Apologies as this is a long read 🙃 I've got a GP appointment booked for 9th May, with a doctor I've not seen before and who is relatively new to the practice. I'm wanting to ask for a Rheumatology referral and have written the below out as a crib sheet for me to take in.

I'd appreciate any thoughts on it please. Although I think I may well have SLE/UCTD too I know from posts on here that the negative ANA will generally rule that out now so am concentrating on the probability of Sjogrens which has always been loitering in the background.

Thanks in advance

"Reason for this appointment

I believe that I may have Sjogren’s Disease or another Connective Tissue Disorder due to my symptoms and wish to explore this possibility with a view to getting some treatment that may help improve my condition or at least prevent it from worsening.

I therefore wish to request a referral to Dr Elizabeth Price, a Rheumatologist at Great Western Hospitals NHS Foundation Trust, Swindon.

It’s important to say that I’m not trying to collect diagnoses, more that I want to ensure the ones I have are correct so that am receiving the correct treatment.

I know that within my recent blood tests the ANA came back as negative, which the lab has stated obviates the need for further ENA/DNA Ab testing, however in its recent guidelines the British Society for Rheumatology states that in people suspected of having Sjogrens Disease the ENA should still be measured even if the ANA is negative. This is because a high percentage of patients with Sjogrens Disease are sero-negative.

As my eyes are currently causing me a lot of additional pain, I experience both stabbing pains or a heavy ache in my eye socket (particularly left eye) to a level that can wake me up. Could a referral to opthalmology also be considered?

Background – my symptoms and current diagnoses

You will be able to see from my medical notes that I was diagnosed with Reynaud’s Syndrome and Chronic Blepharitis in my early teens, resulting in regular chilblains, swelling and discomfort to both hands and feet: and repeated styes/chalazions in my eyes. Dr Pike suggested I should always keep spare antibiotic eye drops to hand, as the issues with my eyes are so frequent.

I also experienced regular migraines in my teenage years, which are now greatly reduced.

I was diagnosed with IBS in my early 20s – my main symptoms of this are chronic constipation and painful bloating, and I now also experience intermittent bladder/urinary issues

In 2010 whilst I was experiencing a particularly debilitating period of my illness, Dr Mowat investigated the possibility of SLE, but due to a negative ANA result at that time diagnosed me with Fibromyalgia. He told me that he believed that I had Sjogren’s Disease but a diagnosis was not pursued at that time as he felt it would have no effect on my treatment options.

Prior to menopause I experienced menstrual problems both mennorhaghia and dysmenorrhoea, and I also have ovarian cysts and fibroids.

I often have prolonged effects following colds/chest infections (post infection bronchial hyper-reactivity as per Dr Topham) and had an episode of pleurisy in 2002.

In addition to Reynaud’s Syndrome, Chronic Blepharitis, IBS and Fibromyalgia I also experience widespread pain especially to my back and hands (including chilblains and swelling), recurrent skin issues, sun sensitivity, and my blood results regularly show low ferritin, low Vitamin D and Vitamin B12. And my levels of fatigue are increasing steadily.

My dentist has often told me that I have had blocked parotid/salivary glands; although this did not show on an MRI I had. My jaw (and into my ears) can be especially painful, clicks frequently even locks occasionally.

I believe that all of my symptoms have worsened considerably over the last few years, and although I have always tried to self-manage them, I don’t feel that it is unreasonable to ask that an alternative/additional diagnosis be considered.

Family Medical History

Mother and maternal aunt both diagnosed with rheumatoid arthritis, and both have had benign parotid tumours removed.

Maternal grandmother also had a rheumatic condition and subsequently developed Multiple Myeloma."

Congratulations if you made it this far!

[roby1988]

Hi Wispymisty🙂I think you got very nice sum up. My symptoms are veryyy similar to yours regarding UCTD: I am ANA and ENA negative. My dad has psoriatic A, his sister Gout and cousin Raynaud. Wish you all the luck xxx

[Wispymisty in reply to roby1988]

Thanks - I think there are a lot of us around with negative bloods but so many of the symptoms. Just hope I can get somewhere, we'll see...

[Chris21]

Hi wispymisty,

have you seen any consultants or has all your symptoms been dealt with by GP? and what medications are you taking?

its difficult for anyone to say if your notes are ok as we dont know your medical history (apart from what you've said) the symptoms you say sounds like you should see various consultants for each individual symptom and maybe keep asking them the same question, could it be?

[Wispymisty in reply to Chris21]

Hi Chris21I finally saw a rheumatologist in 2017 - my GP had been resistant to this since my fibromyalgia diagnosis but following a gastric flare up a gastroenterologist actually wrote to the surgery and instructed them to refer me.

At that time, I was struggling a lot and hadn't really prepared any notes. My negative ANA meant he dismissed it being anything inflammatory at that time, despite in his letter mentioning the Malar pattern on my face. I mostly just plodded on after that despite feeling there was something else.

I have also been seen by Endocrinology after an MRI found Empty Sella Syndrome, they checked my thyroid levels including a short sinacthin test and then discharged me.

I'm just at the end of my tether now, totally exhausted with it all and just about frustrated enough to give it one more push.

I really posted this to see if people felt it would be enough in a short GP appointment to legitimately request a referral?

[Chris21]

i know how much a mi field it can be, i was constantly told it was all in my head! I even saw a rheumatologist who tested and because the ANA was negative dimissed it all saying nothing wrong, then i got pancreatitis twice with no explanation and it was on the second time of my hospital stay that the gastro team found i had lupus and reffered me on directly to rheumatology. Then i had a host of things diagnosed.

looking at yours notes again, and a bit more info, i think youre being to polite 😂 maybe just tell them as it is.

Gastro wrote to you (gp) stating i should be referred to rheumotology and this still hasnt happened. i would like you to refer me to dr elizabeth at great western hospital as my health is not getting any better.

then say what the main problems are, personally i would go with joint pain and fatigue as the main problem, as thats the main area for rheumatology with the other things as extras. Its when you get an appointment there you can suggest sjogrens.

or ask the GP if they can suggest how you go about getting sjogrens ruled out

also i feel if youre getting pain in your eyes then it would be worth going to optician because if anything wrong they will send you onto to eye department at hospital.

A nurse once told me, those who shout loudest get heard, ive also found if you keep going back to the GP they do actually start to take notice.

i hope you get some help from the GP 🙂

[Wispymisty in reply to Chris21]

Thanks Chris21 - I do feel it's time to start 'shouting' as I feel I've more or less been left to get on with it all. I was erring on the side of politeness as I've not met this GP before (he's relatively new to our practice) my husband saw him a few weeks ago and thought he was quite thorough. If he's a good one I don't want to alienate him 🤣 but I could probably be a bit more forthright!

[stiff19 in reply to Wispymisty]

im glad your husband thought he was quite thorough but in honesty that means not much as ,my husband has seen docs who are thorough and polite and when ive seen them not so (Women can be treated differently in my experience) or just on an individual premise.

[Wispymisty in reply to stiff19]

That's very true - I'm keeping my fingers crossed but the proof will be in the pudding

[stiff19 in reply to Wispymisty]

I hope hes thorough with you too 🤞

[CecilyParsley]

Hi Wispmisty,

I think your crib notes are great but in a ten minute appointment your GP will not be able to think and respond appropriately I fear.

As someone who has had so many changed]s of diagnosis and so many frustrating Doctors appointments, I believe you need bullet points not long explanations to give the Doctor an opportunity to comprehend your issues and act upon them.

I wish you the very best of luck, let us know how you get on xx

[Wispymisty in reply to CecilyParsley]

Thanks 😊 I posted this on the Lupus Facebook too and someone else said bullet points would work better - and you're right. I have a tendency to try and get a big explanation in and for something like this short and to the point will definitely be better.

I think now I've collected my thoughts and main points together (although some tweaks needed) I'll revise it for a bulleted list.

Thanks again

[CecilyParsley in reply to Wispymisty]

I do the same thing but my repeated attempts to let Doctors see the bigger picture has got me nowhere sadly. Good luck xx

[Wispymisty in reply to CecilyParsley]

It's awful trying to get them to understand isn't it 😔

[CecilyParsley in reply to Wispymisty]

Absolutely. I know I have a tendency to tell them chapter and verse and the more I see their eyes glaze over the more I babble in desperation. Now I try to select one thing if it is possible .It certainly has worked with my Rheumatologist and I have had my eyes, and my voice box looked at xx

[StriatedCaracara]

I think what you have written is very good.

[Wispymisty in reply to StriatedCaracara]

Thank you 😊

[redmaggie]

Interestingly, I have found that "new" doctors take more time and effort, especially hospital docs on their temporary GP rotation can be very attentive. they are supervised and probably desperate not to mess up. Not all long stay docs are good, they can become jaded and make lazy assumptions. I agree with other answers, boil down your list to a few priorites and be confident, even if you dont feel it! Wishing you good luck with your appointment.

[Wispymisty in reply to redmaggie]

Thanks redmaggie 🙂

[stiff19]

This sounds good and im sorry you've gotten to the point where you need to shout to be heard. I didnt try this but tried to get heard to no avail .I continue to suffer and ive had to head down the complaints line as I need answers but its so very long winded and its not helping me presently progress health. I dont know what we have to do to be heard im years into my journey and I think its great you are trying at least and I hope it works for you but if not ,do not give up. It doesn't matter how many consultants you see if you cant get an answer if you still have problems because ive seen a few but until I can see one worth his salt im getting nowhere and hypercritical conflicting bull hence the complaint. ive tried being patient and polite and losing my temper a bit. I was asked to be referred elsewhere away from my local hospital and denied. I believe it true that if you are referred as a first consultation you can choose 🤷‍♀️ so dont be fobbed off, I see you have a preference. ive been told we dont have all the answers and most recently that they cant unify my symptoms for diagnosis only those of fibromyalgia,(even though other symptoms acknowledge not to be fibro) but then how can they with no testing. the rheumy said we wont find a diagnosis unless we know what we are looking for 🤷‍♀️what the hell that means I dont know.

I sincerely hope this helps you and I wish you all the luck in the world (we need it) 🤞🤞🤞🤗

[Wispymisty in reply to stiff19]

Thanks - I feel like I've laid low for years now slowly getting worse so really wanting to try again for answers.It's a difficult, uncomfortable journey for us to tread isn't it 😔

[stiff19 in reply to Wispymisty]

I know exactly how you feel and I am in the same boat sort of. It's a terrible journey and I cant help but think it has to end at some point but id like it to end with some answers. I laid low but all thats done has left a big gap of history thats proving hard to fill as all they want to know is on the day and my hell before steroids is a huge piece of the picture. Dont lie low it's desperately hard but you deserve answers and some help , we shouldn't have to wait to be an urgent need before help and little quality of life. 🤝

[Wispymisty in reply to stiff19]

So true, we shouldn't have to push so hard to be heard 🙄My appointment isn't until the 9th so I'm gathering all my evidence together, bought a new notebook and folder (I'm a stationery geek) and will feed back how I get on

[stiff19 in reply to Wispymisty]

yes hope all goes well and at least you are organised 👍and ready for it. look forward to hearing how you get on.🤞