Rhuematologist Appointment

[Danielle2419]

Hi Everyone

Went for my routine rheumy appointment, its been a year so the problems have mounted up.

I made a list on my phone due to having brain fog and possibly forgetting them. Im having some issues with balance and veering of to the left, electric shock sensations and headaches. The obvious joint and muscle pain in shoulders and legs. few scabs in back of head not to mention scabs in one nostril and ulcers in mouth. Additionally I have also had repeated bouts of gastric 5 times this year (concerned of digestive system issue). Have the occasional chest pain plus breathlessness which I also mentioned. I have the lupus plus antiphospholipid syndrome and asthma.

Well.... I got completely fobbed off, was expecting this consultant to want to check about the balance, headaches and electric shock, maybe a head scan? I have seen many consultants at the Louise coote lupus unit at Guy's and left happy and satisfied with experience, have only ever seen this guy once before and wasn't happy. Feel like I wasn't taken seriously at all.

I was offered steroids for a short course to be fair I'd rather not, im self medicating on doctors advice when needed and still get minor issues. I would of liked something for the nose and mouth ulcers and possible further checks on digestive system and head scan. Am I being an absolute pitiful cow? I feel because nothing is presently wrong and visible there and then im presumed fit as a fiddle, probably right on the outside for a 25 year old, but inside would of preferred checks, these have been offered before just for a headache as requested by Dr D Cruz.

Im not going to ridicule the consultant on here for his lack of understanding and compassion, rather just wanted a big fat rant!!!

Oh and my next appointment is January 2021!!!!

Thanks

Danielle

[Hidden]

Danielle, I’m so sorry. That’s so frustrating, and a waste of your time as well. I would suggest to this doctor that maybe he find another profession, or become a lab doctor where he’s not dealing with people, and his lack of manners, respect, and humanity wouldn’t be a problem. Again, I am so sorry, and I hope you are able to switch to a doctor who listens and cares. 🙏

[Lisalou19]

😕. I would so complain and request to see D Cruz. I see him and I know he has a key interest in lupus and the affects it has.

Do you have the Rheumatology nurse email ?

Wrote a complaint.

Surely they can not leave you until jan 2021!!!! That is barbaric 😡. I’m confident d Cruz would feel the same.

Xx

[CecilyParsley]

I am so sorry Danielle. I went to the Lupus Unit at St Thomas’s nine years ago as a Rheumatologist felt I had low grade lymphoma. I saw a Dr S. On my first visit he was thorough and told me that without a doubt unless someone else had taken my bloods I had SLE. My relief was tangible, not because I want Lupus but because he ratified my concerns. I went back to see the same consultant eight weeks later. He had received an irate letter from my local Rheumy stating that he felt I did not have Lupus but Bechets, Fibro and Lymphoma. He completely dismissed me stating that I did not have the sort of Lupus that would kill me but UCTD. This was not based on any further tests or examination. I cried all the way home to South Wales. It put me off Rheumatologists and I went two years without seeing anyone until I became very unwell. I am so very sorry that you too felt a doctor invalidated your concerns. I do hope that you find a local Rheumatologist who is more responsive and compassionate. Have a lovely Christmas ❤️🎄

[Lizziequink]

You shouldn't be going through all this at your age Danielle. I can relate to how you feel about being fobbed off and I think you're right. If you look ok and don't complain they think you're imagining it. I've always been a positive person but have experienced the same issues as you describe with your consultant with comments like ' you've never mentioned this in the past' when I haven't seen him for a year and new symptoms (confusion, balance and visual problems, extreme tiredness and anaemia) have appeared in that time.

When I told him that pre-op blood tests had indicated antiphospholipid syndrome he said he hadn't seen that report as it was done at another hospital and didn't order the follow-up blood tests that had been requested after the op. Because my husband was with me to support me, he got very defensive and said that since I was obviously unhappy with him I should see someone else.

So after 4 months I finally had another appointment, only to find out the person I saw had in front of him a letter from my previous consultant explaining his side of the story. When I asked to see it, he told me I'd been sent a copy as it said so in the letter, but I hadn't received it and strongly believe it was never sent. So I'll keep on keeping on

This site (and obviously my husband) are what I rely on to reassure me I'm not imagining it all and I'm not a pitiful cow, and believe me, neither are you. Take care of yourself and you'll be in by thoughts over Xmas. Liz xx

[alice_sportyauthor]

I see my consultant once a year, but I see a nurse after 6mnths and have bloods taken at the GP in 3mnths in between.

My consultant is fairly dismissive too. But strangely ALWAYS asks me if I’ve had mouth ulcers which I don’t, but I do have sores on the back of my head which he is NOT interested in!

My GP is great for actually talking me through stuff. Maybe take your main concern to them... The lack of balance and heading left would be my main concern!

I had dizziness and a feeling nauseous and a feeling of not walking straight when I first took mycophenolate, it did pass eventually. Oh and I had a headache for about three years, but I’m still here.

Do you get given a phone number to call in case of problems? Maybe call that number if you get nowhere with your GP and you still have a issues that you are concerned about that are not getting better in a couple of months?

Good Luck