Hope everyone is doing ok am looking for a bit of advice as getting nowhere with rheumatologist or gp
I have had very little voice & quite breathless I am also suffering with my legs being painful even just going small walks I feel tired most of the time as well I am not on steroids I take hydroxychloroquine & methotrexate I asked my gp if I could get put on steroids till this was cleared they told me to speak to my rheumatologist I did this yesterday & he just dismissed me & advised I didn’t require steroids or any change to my medication
Has anyone have any advice as I am struggling here I am also going on holiday next week & don’t want to be like this
thank you all so much xx
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Murp17
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We are just a number to gp’s & I understand there is more than me in the surgery but like you your past from pillar to post it’s so frustrating. They make you feel like your kidding on your not well
It’s shocking that you’ve had to go private just to get the help you deserve hope you get things sorted quickly x
Sorry you are struggling. Your Rhumy should have at least offered a steroid injection even if he didn’t want to prescribe a course of steroids. I would advise booking an emergency GP appointment and getting them to listen to your chest, check blood oxygen levels. If they refuse I would go to A&E.
Earlier this year I had awful breathlessness on exertion to the point where my voice became very faint. Was getting totally exhausted and couldn’t even walk a short distance. After a week of it slowly getting worse, I went to GP who said everything was fine and ordered an X-ray, but as it continued to get worse I ended up going to A&E. Had to stay in hospital for a week as my blood oxygen was so low (when taken from my arterial blood, weirdly the finger oximeter was normal levels). I only started to improve with oxygen and steroid infusion but it took me ages to recover.
I paid to see a private lupus specialist afterward to see if he could shed any light on what happened as my own rhumatologist not great and he said they they would have been issues in my lungs that they missed as they only ordered a CT scan to check for blood clots and not a high res one.
His advice was that if it happens again, go to A&E straight away, don’t wait it out at home, and make sure you get a high res CT to rule out lung issues.
Hope that helps and you get better in time for holiday
Thank you so much this was a different rheumatologist and felt he wasn’t interested the 1st one I saw was fantastic I asked for a steroid & he said I didn’t require any & if anything it may be polyps on my vocal cords but wasn’t going to do anything with regards to it. When I explained about my legs being heavy & painful he more or less said it was because of my weight. So ill weight & see if I get a reply from my doctor if not I’ll phone nhs24 thank you so much for your help I hope your feeling better soon xx
No worries. Hope you improve soon, definitely consider going to A&E if you don’t get anywhere, particularly with breathlessness as it can be dangerous if there’s something else going on. Better to be safe than sorry, plus you want to be loads better for your hols! Keep us posted! Xx
Morning, I feel your frustration! After being totally dismissed by my GP for several years, I eventually went private to see a rheumatologist. He finally diagnosed UCTD and Fybromyalgia. That was 20 months ago, he put me on his NHS list and managed to see him once... Other symptoms started and I have been plagued with sore eyes, sinus issues, sore mouth, throat, ears etc., to a point I thought I would have to go to A n E. My GP was once again dismissive, even after several courses of antibiotics and questioning if it was connected with my UCTD and was told definitely not. Not once as my GP discussed my UCTD diagnosis. I tried to contact my consultant via the hospital, no one ever got back to me or answered the phone,, so a couple of months ago I paid to see him privately again. He asked why I'd waited so long to come to see him and he didn't seem surprised when I told him my sorry story... Anyway,the upshot is, yes it is connected to UTCD - probably Sjogrens. I'm going back to see him this week to get my test result, but quite cross that the whole process has cost me his fee and £580 for blood tests, but at least I know I'm not going mad. I hope you manage to get to the bottom of things and if you can, even though it costs, I would still go private. Like someone as already pointed out, we are just a number to our GP.
Thank you so much all the consultants said it was related to Sjogerns but still didn’t do anything thank you for your reply I hope you get everything sorted out. I’ll look into going private
In my book any rheumatologist who doesn’t just rely on steroids to ease the inflammation ‘for now,’ is worth listening to.
If you have rheumy nurses ,try to run things by them, if not write a detailed letter to your rheumy asking what future plans he has for your treatment,
It can take months for Hydroxy &Mtx to kick in….so if I were you I’d listen to your rheumy for the next few months.
Getting things right now is better than juggling drugs for years.
It,s surprising how putting pen to paper concentrates a consultant’s minds. The letter will be on file…..therefore your future condition is his responsibility.
Hi I am new to the group but not new to Lupus/Polymyositis/Sjogrens/reynauds/Fybromyalgia and other relatable stuff. I used to get a picture on paper of a body and put numbers on the body relating to what my symptoms were and a written explanation to match the numbers and be prepared to hand it over with a letter explaining the reason you ha ve taken to writing it down plus a polite note stating that you the doctor are a) not listening b) treating you without compassion c) not e planning why you don't require certain medication. You might be surprised at the change and the response most hospital consultant forget patients are people first. Hope ut helps x
What I would do is phone the GP to ask if they have the results and if so make an appointment with the GP to discuss them, it might just speed the process up. Take care ❣️ a hug and lots of love ❤️🧡💛💚💙💜
I’ve not had my bloods done yet because the clinic I was at too see my rheumatologist was closing so I have to get them done at my GP’s & i couldn’t get appointment till Monday. So I’ll wait till they come back and see what the GP says
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