It's been a 6 year battle, I'm in constant pain now, I can't go out in the sun at all (even when overcast it's bad), I have a positive ANA of 1:640, I get nasal and mouth ulcers, I'm exhausted, I get protein and blood in my urine for no reason, the skin around my nails swells and cracks during flares, I get rib pain on one side, constantly and grating sometimes when I breathe in and dry eyes, and I have a clear red/purple rash on my nose and cheeks which is now becoming awful and bumpy. But when i finally saw a rheumy 2 months ago he just refused to listen, he asked me what my "main symptom" was (joint pain I guess) and then ignored the rest.
All my other blood tests are fine, and he says that since the ANA "can be positive in healthy people" he's going to ignore it and it "definitely isn't lupus" it's probably "just rheumatic" My facial rash is awful and embarrassing (I've been advised on the skin forum to try and see a dermatologist with the hope of getting a biopsy) and the pain is constant and debilitating. I'll be seeing him again next month, what can I say to make him actually listen to me? Earlier this month I got so dizzy and weak I fell down some concrete stairs and injured both ankles - ending up in a wheelchair. This can't go on, I have a toddler to take care of. I feel helpless. Oh and I also lost a child to prematurity three years ago. What does it take to make them listen?
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happyp
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A very short reply to your long term suffering. Ask to see someone else, you have nothing to lose, and your GP can help, even if it means travel to another hospital. Keep on with Dermo too.
Just getting to see this rheumy took 6 years and then 9 months from referral to appointment , I have no chance of seeing anyone different unless I go private. My GP didn't even want to refer me last time. He told me it was stress. One even suggested I was making it up.
Wonder why rheumy has given you a follow up appt. Hmmmm. Seems you have a bad bag of medics and I feel for you. I had all this nonsense for 7 years, even said I had munchausens !!!! I did pay a one off fee to go private in the end. Was diagnosed pretty quickly and transferred to NHS clinic. Get GP to refer you to a Dermo. Don't mention the word lupus. Just say all your symptoms and act ignorant to the fact it may be connected. To be honest I don't have faith in my advice to you. These Drs have, 'set their stall out', and probably would rather die, than admit they were wrong. I had to deal with these sorts of Drs myself, so I go back to my 1st response which is, change them. Both GP and rheumy. When our administrators are back, I hope they can suggest something more suitable for you. I wish you luck.
"Doctors from Hell" springs to my mind..why we don't have a TV program of that..? Do they need to be "Dr Shipman" a pillar of community who was busy murdering hundreds of OAPs? There are so many doctors who are also guilty of not giving help and support to patients who are badly in need of their help. This thread is a fine example. Happyp..do you have a bossy husband or a super assertive Dad? You might want to take someone with you..Certainly, fire such an idiotic GP who treats you so appallingly, move on and start fresh. Suck the unhelpful Rheumy who did nothing to help you..but to patronize you..such an appalling behaviour..!
Your ANA is higher than mine initially. No idea what it is now. My initial one was 320. Your a titrate above mine. I think you need another rheumatologist. I initially saw a rheumy who said she could do nothing. Luckily I live in an area I can go to 3 local authorities or whatever the up to date name is these days. I got to the Freeman Newcastle and all I can say is excellent. It's taken a year of assessment and drugs being added but I now know I'm being taken seriously?
Can you get a second opinion? Have you got a GP you can approach. They will refer you to someone else. They can be a funny lot these GP/ doc types and not all of them have done the research we have in to Lupus. But they may of heard of a better person for you to be referred to. I certainly know who to tell people to ask for in this region now.
If you don't have decent Gp then move, please. There are caring people out there. Hard working , usually exhausted and demoralised with the NHS today. But they do care.
hi happyp.i can totally sympathise with you.was referred to a rheumatologist in 2011 who wouldn't even listen to me.didnt give me the chance to tell of symptoms(and now -exactly the same as you ve listed).he was only bothered about weight gain(not accepting it was all abdominal))CA125 -a gynae concern -not his!- and need to lose weight -despite my tellign him I hardly ate anyhtign more than breakfast.and then had the nerve to say "it still fibromyalgia".ignoring other symptoms of lupus my gp refuses to refer me to a dermatologist on advice of A&E drs.-despite having a rash on my legs and arms \nd other sores.my fight has been going on for 3 years tryign to get answers and a diagnosis.it also took a year to get to see the rheumatologist again (thru his secretary) and all he did was dismiss me even more.not answer to the comments he made in his letter which were not what I had told him previously and was the reason for the meeting.still battling with gp as well .told him a few weeks ago my legs were swollen-no response-then last week after telling him I couldn't walk on my r leg after tripping over my dog-he said oh your legs are more swollen at the back.!! ;like yes I told you so a few weeks ago!
Hi
I felt really moved to reply to this, here's what I'd do:
1) keep the follow up appointment (backup)
2) sign up at a new GP. Your old GP isn't helpful - far too long to refer and I dread to think what the referral letter said. It's easy to sign up to another surgery - proof of ID and address and you could have an appointment the same day.
3) I have found this incredibly useful: take someone with you and prep them with your symptoms and explain your difficulty so far. I take my boyfriends mother as she's a strong character & steps in if she thinks I'm not being taken seriously. I've found GPs and specialists are all a lot politer and explain themselves more with someone else in my appointment.
4) don't whine or put yourself down and I know this is hard, but try not to sound desperate or emotional. Treat it like a job: immediately explain your symptoms and say you want a referral to a rheumatologist for a second opinion.
5) this is your life. You shouldn't have to fight so hard no, but you have to. One day, hopefully soon, you'll get to a dr who is competent and this will all be a horrible memory - I hope it's soon let us know how you get on xx
This is great advice. When you do get to see the specialist make sure you get copies of the letters he/she sends to your GP. I find it helps me understand where they are coming from and plans etc
I feel so sorry for you and think there must be a doctor out there that will be better support for you. I find it useful to keep a symptom diary and also score each day from 1-10 so I can get a sense for how I feel over time. That might help you explain things in new ways? Hang in there.
There are probably other doctors at your current practice you can see who might be more sympathetic. Also, you rarely see the top consultant after the first appointment, usually the registrar and they are often better. My first consultant was so full of his own importance but when I moved three years ago got a much better one. Amazing how it can vary. Stick with it, someone will see sense soon.
I was diagnosed with SLE after being misdiagnosed with Rheumatoid Arthritis and "some sort of immflamatory thing"??! I was very unhappy initially with my Rheumy. I sat down and wrote a letter explaining my symptoms, the type of life I had pre SLE and my current type of life. I guessed that the rheumy needed to understand the negative impact as well as the symptoms. I said that I was not settling for being fobbed off and relied on her medical knowledge to LISTEN to me and HELP me. I also posted a copy of the letter to my GP. I reckon when things are on record in writing there may be a chance things get addressed properly. I ensured my letter was not complaining more requesting. Well, my letter resulted with a very positive outcome and GP and Rheumy take me very seriously now and actually look into any research info I come up with and telephone me with their thoughts! I couldn't ask for a better relationship. So maybe a letter is worth a try? Good luck. PS .. It was the nose and mouth ulcers that clinched it for my Rheumy. Keep smiling .. You'll get there, I promise
Seems like you seen the same rheumy as me or his brother. For the last seven years I have suffered purple bruises, red marks under my eyes and forehead, painful joints, puffy eyes, poor balance, the only time I felt well was when I went to Kenya which I was dreading because of the sun the only thing that was different was malaria tablets I'm thinking of taking them regular they are expensive but worth it to feel well. I have given up with the rheumy team hear.
Im afraid the majority of us have been in your shoes .... I did a diary of sypmotoms and took lots of photo graphic evidence ie rashes, sores etc. I wasn't getting anywhere fast in the end I got so fed up I complained, the consultant appologied its not something to take lightly but for me it has been going on for over 20+ years and two careers! Be strong, be positive you will get some answers we know what we go through isn't normal....be like Sherlock homles put your story into a case history and make them see! good luck! The photos by the way are now in my file and did prove my diagnosis.
Find one that will take you seriously! I had one Doctor tell me that I just needed a good shrink. I refuse to pay his bill and never saw the guy again! I actually have an Internist now. She is awesome!
They will listen but you have to make the right noises in the right ears! I would suggest you try to get a referral to a dermatologist too, I have been a lupie for almost twenty years now, I have been seen by and ignored by various doctors but when I eventually saw a dermatologist who understands the difficulties of being photosensitive I actually felt that I was being listened to. I at last had a sympathetic person who realised my difficulties were all year round not just when the UV index was strong and also that low energy lighting and florescent lighting effected me too. I wear gloves, scarf, something on my head and clothes that block UV rays all year. On any exposed skin I have to apply at least factor fifty sun cream even indoors at work as there is florescent lighting. I have coping strategies for my pain since I have been going to a pain clinic and have ways to cope with the fatigue - like standing three stops before I need to get off the train so that the train driver does not have to wake me at the end of the line now. I have brought up two children who are both well adjusted adults and have been registered as my carers since they were three and five as am a single parent. Yes it was tough going at times but well worth it when I look at them now. Like you I lost one too.
There is hope for you I lead a full and active life now and thoroughly enjoy my better days. When it comes to talking to doctors it is not always a case of not what you say but how you say it or who you say it too.
Thank you everyone for your advice and kind words. I'm not a very forceful person and have trouble speaking up for myself. I don't know why, but when they start telling me it's nothing, or I'm making it up, I just go quietly into despair. I now dread seeing my gp so much that you have to drag me kicking and screaming when I'm ill. How bad is my gp? They have a huge flight of stairs to climb and no lift. On really bad days I can't climb them and they won't see me downstairs.
However, next time I see my rheumy im going to make sure he listens to all my symptoms and sees the photos if ny rash. He wouldn't look last time. Luckily I brought copies of all my bloodwork last time because he didn't even have that. And if he won't listen, then I'll have to find someone else. Even if it means moving gps (again) or saving up to see a private doctor
Have you got a friend who knows the pre Illness and post illness you? I asked someone who really knew me so she could say, 'this is not my friend, my friend is ...... this person is half her former self' that helps.
Fortunately I have a good relationship with my GP (she knows she doesn't see me very often so she believes me when I say, 'this is wrong') Work on your relationship with your GP or move on !!!
Diary, diary, diary. Then you can say,'in January I had to take this pain killer this many times, in March I had to take this much more, so my symptoms are continuing to get worse' etc Drs are often 'Scientists' they like facts and research, rather than 'I think I'm getting worse'
Before your appointment think about the 3 most worrying things for you and make sure you get to talk about all three. The Dr might not be interested in those symptoms, but at least you know you raised them - I was worried about sores on the back of my head, I raised it, they didn't seem that interested, so I tick it off my list of worries unless it gets worse. When the Dr starts the summary & chuck out, have a look at your list and say 'Can I just ask you about ....'
Sounds odd, but the more 'business like' you are about the illness the more they seem to listen, although some times a massive melt down in the middle of appointment works tooooo !
PS see if you have an active local Lupus UK group, I go to one in Sheffield every couple of months, they would help a lot with hints and tips and general support.
Ug! I am so angry for you! Ask to speak to his supervisor! Why did it take so long to get a referral anyway? Also, if it's a group, then there shouldn't be any reason you couldn't see another doctor in clinic. And if not, why not see a private practice doctor?
It’s a disgrace. Same for me but because all test clear it’s fibro. In a year I have gone downhill rapidly, just had the most frightening flare of all time for 5 weeks , fingers now going all directions twitching swelling going hard colourful , permanent face droop muscle weakness and like stone and had no help to date. Have rheumy appment next week, I expect the same fob off so am looking for private once I got the money and hope I don’t get flare between now and then because I thought I had my lot. If you really feel it and see it and suffer it just get another opinion and keep pushing. I’m half the person I was a year ago , I’m scared witless which doesn’t help so keep looking for that help. I think women are so in tune with their bodies they know when something’s not right. I was fighting both go and rheumy but last couple of months worsening and words with my go which upset us both, and going with each new visible symptom , she can see it not right and is relying on the rheumy herself , therein lies the problem, gp can only help with certain things which is why she referred me for answers and rheumy dismissive so doctors hands are tied with no diagnosis like me 😡 I really wouldn’t mind but been looked at once , not asked how been not asked if anything changed nothing but blood and xrays no history no examinations so how can you diagnose on that.
Good luck I hope you find the answer I’m still searching like you x
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