LUPUS UK
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First Rheumatology Appointment

I'm just back from my first appointment with Rheumatology, not really sure how it went, they were having problems with their system and had none of my notes, I got asked just general questions and she examined some of my joints then she said my blood pressure is a bit high but probably just because I had came in to hospital, she took blood to test for rheumatoid factor. Nothing was mentioned about lupus or it showing in biopsy, she did say I've already had my ANA checked. I've to have an x-ray of my hands and wait for another appointment. I was in and out in just over 5 minutes, appointment was at 3.30, didnt get taken until about 4.45 which made me miss the last bus forcing me to phone my Dad *big sigh*

I've had to go on job seekers because I failed ESA medical.

*bigger sigh*

Hope everyone is having a good day

Tina

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Forgot to say, she prescribed me naproxen 500mg twice a day? She said Hydroxychoroquine but I've been on that and am allergic to it.

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Heck it's so hard to bear really isn't it? I must have missed your last post a month ago but reread it and see you are from between Stirling and Glasgow - so would that be Larbet then maybe? I ask because there is someone here called Keyes (Lynn) who lives around this area and has a good rheumy I believe. She works asa volunteer on the Vasculitis UK helpline so it might be worth phoning her if nothing conclusive comes out of this rheumy consultation you've just had. I'm sure she would be only too happy to talk it through and make suggestions because she went through the mill herself to get a diagnosis and will understand more about ESA than I do too.

The only thing I would say (and I did have something very significant turn up in my lumbar puncture but my previous neuro in Aberdeen just shrugged it off) is that both Sjögren's and certain forms of Vasculitis can mimic MS very efficiently and not show up in serum - also lots of overlap with Lupus for both. Might be worth asking the rheum about these diseases if nothing helpful comes from these latest blood tests.

I live in north Fife and rheumatology services are equally stretched here. But since moving hospitals and being rediagnosed with primary Sjögren's rather than RA - rheumatology and neurology in Dundee have been quite good for me. It's just so variable though and increasingly most people are treated as deplorably as you have been. I was allergic to Hydroxy too but am doing okay on Mycophenolate now. Best of luck being as pushy as you have to be. Sadly it's the only way. If you lie down and take 💩 because you fear the consequences of being assertive then they are only too willing to dole out more I've learned🙄 X

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Hi Twitchytoes, I am one stop on the train from Larbert but I am under the Glasgow side (G65) This Doctor I saw today is an expert in Vasculitis, I wonder if it's the same Lady. She did mention Reynauds today "any discolouration etc" When I started describing my hand symptoms we didn't reach the part about discolouration, the subject was changed. The whole thing is exhausting.

I've just been reading about naproxen and a side effect is sun sensitivity which I already struggle with and have a dx of Jessners.

I'm disappointed with myself that I missed a lot of stuff out but with the system down she had no clue as to why I was there, so awkward! I had to tell her I've just came through neurology and been discharged, I think if she had more in front of her she might have had a better go. Maybe the next appointment will be better, today's was a cancellation arranged on Tuesday so not much time for her to know much about me.

I'm glad you're doing well at your hospital, my cousin has MS and lives in Glenrothes and she is literally on her own with it.

Thank you for your advice and tips on plodding on with this, it's an actual minefield! x x

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Bizarrely - having just looked up Jessners - I think it might possibly correspond with the strange pink patches on my face that I've been trying to get to the bottom of? My GP explained that she didn't think it was Rosacea as I'd previously assumed, not Seborrheic Dermatitis because it doesn't itch or flake. Hmmm probably adding up 2+2 and making 5 here - so suggestible me?!

My middle son lives in Stirling (at uni there) and has lived there for 4 years now. He has a hereditary heart condition so attends Larbet. Your poor cousin that's sad. Mind you I only don't feel alone with Sjögren's because of this community!

This link may be of interest to you. hopkinssjogrens.org/disease...

I hope you can get another appointment with the rheumy soon. You could PM Keyes and ask about her and possible Vasculitis?

It's a really good idea to go to every appointment armed with print outs of bloods and bullet point of photos, referral letters, history in chronological form just in case this kind of computer glitch happens I have found. It happened to me once so I learned the hard way and insist on copies of clinical letters and blood test results at GP Practice reception now. If they ever try and give me 💩 I would just remind them of recent cyber attack.

I posted today with an NRAS video and my thoughts on becoming an expert patient - might be worth a read so you go prepared for all eventualities next time. Xx

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I know lots of people who are at Stirling Uni, my sister went there too, it's fab! I hope he is enjoying his time there. My town used to be under Stirlingshire then we got trailed to the North Lanarkshire side.

Hardly anyone I speak to knows anything much about Jessner's, it is under the lupus umbrella but this dx only covers the skin symptoms and nothing else, not even the fatigue. It's mostly on the face and upper body where is exposed to uv, my upper arms, face and neck get caught a lot, sun cream doesn't really help and steroids don't work much either It's the flair ups of it that the dermatologist is biopsying, it comes back showing lupus then they take a biopsy from "unaffected" skin and compare, the comparison biopsy is a tiny punch biopsy, I don't think it's enough to find it but I am not the Doctor! lol ...how many times have we all said that?! I have pics of a load of different rashes that I get including the jessner's which is quite distinctive, I'll take a pic tomorrow of my latest small flare and post them so you can see a decent pic of what it looks like, sometimes it's just one or two blotches but they last for months sometimes then seem to disappear overnight. Something always shows up in my blood work, most recently I have a face that looks like I'm trying to hide a golf ball in there after having an anaesthetic at the dentist 2 weeks ago, I have a dental appointment tomorrow but to scared to go because of the pain I'm still in from 2 weeks ago...an idiot could work it out.

I would have no idea how to even ask about having my own copies of blood work etc, I just have to take their word for it and always have. The only time I lost my temper was when I had a frozen shoulder and the GP kept giving me painkillers without even doing an examination of it, all sorted now after I stamped my feet over it of course.

I'll click your link and have a look at your video post. I would be lost without the forum too, I read a lot on here but I am pretty new to it all so not much use at giving advice.

Thanks Twitchy x x

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It's easy Tee - you just go into your GP and smile sweetly at the receptionist and ask quite firmly but in a friendly manner if he or she can please organise prints of latest clinical letters and most recent full blood counts with any other blood results that they have from the past six months. They might tell you that they will have to ask GP first and then you can say "oh that's fine - but they are my results and I would like to pick them up tomorrow please. My new consultant was unable to access these because their computers weren't working and I don't want this to happen again so I'd appreciate it if you could provide copies please - to avoid wasting valuable NHS time at appointments in future". I'm sure they will cooperate although they might ask for printing costs. You have a right to this information I promise and it will help you to be able to see patterns in your blood test results that correspond with your symptoms and help empower you with your GPs. X

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Well, I have to go there to hand in this prescription I was given today and I'd really like to speak to a GP about the possible side effects so I could use today's computer fiasco as an excuse to bring it up. I know there is no miracle cure here but I am 47 and I don't want to live the rest of my life with an un-diagnosed and untreated illness, my daughter who lives with me just turned 19 this month and is applying for cabin crew jobs, I'm going to be left here on my own with zero social life because my health is rubbish and I can't work well enough to make a decent income...destined to life topped up by benefits. It's not fair but I realise I'm the only one who can do anything about it. I've been down there creating s**t storms when they have been dismissive with my daughter...I was right, she DOES have glandular fever, her college studies suffered because she was so unwell with it and they refused to do a blood test and treated her for tonsillitis.

Definitely time to be bold!!

xxx

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Yes go for it please Tee! It should be a partnership between us and our doctors where chronic conditions are concerned. I expect this from all my GPs (and I've relocated four times in two years!) and I've found that they tend to adapt to this mindset/expectation. And if they don't then woe betide - they have seen what I can do if I'm undermined 😡 - I can and will write a ruthless letter to their practice manager or even the health board that will knock them off their feet!!

Just think of your daughter and of your future and be pleasant but steely!! Hopefully though it will be a walk in the park and you'll get your diagnosis soon. X

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