Just writing to say that tomorrow after waiting a year and a day and my GP asking over and over I have finally been given a telephone appointment at 11am with my hmm rheumatologist. This time I have written a massive email to my rheumy. Iv written everything from how I feel to the medical results I have had to how disabled I am now. (On a happy note) I have given in and accept help from the O.Ts. I have a bath lift,step, hand rail on stairs, toilet frames, foot loopes and a front door Step with hand rails. I can not tell you the difference it has made to my life. I bathed myself for the first time in years. I am so proud of myself lol. (I was totally zapped no spoons left at the end of it) but lovely to do 😊
Anyway I'm rambling. The email is massive as there is so much information from my gynaecologist (who has discovered my inflammation marker for me is my CA125 marker). He will NOT like being told that. I have also sent 7 more emails full of pictures of my distended tummy,bruises everywhere,my twisted distaughted fingers, and feet, my S.A.Ts showing low heart of 42 low oxygen of 91 and heart rate of 146 and oxygen of 81! My malar rash on my face. Even pictures of my frothy dark brown urine! Lol (sorry to much info).
Anyway the reason I am telling you all this is,.......I really really really hope he reads then looks at the photos and listens to me. Because he has put a question mark over my lupus. Because my ana isn't positive. He says I must have positive results. Iv had lupus diagnosis for 4years. Then last year he doubles my steroids leaves me on them all year doesn't respond to an ergent request several times from my go.
Now I am huge. Yes I know I have cushing's. 2 radiologists have put on notes I have cushing's appearance. I have been very naughty I know. However in January I was so blown up I couldn't go on. So I droped to 10mg! Yes Yes I know I can hear you all screaming at me. But I was having bad thoughts about not being able to go on. (I will never tell him that as he will use it against me). But I JUST couldn't Carry on like that anymore ya know. So yes I am suffering all that to on top of what's going on to. but I do feel better in one respect for lessening the full feeling. Like I am going to explode!!!!
Anyway I am telling you today because...... I REALLY REALLY hope I can come on here tomorrow and give you the good news that he IS going to help me. And more importantly remove that stupid ? From my lupus diagnosis.
Honestly I am so stressed and full of anxiety about tomorrow I can't even tell you all. I don't hold out much hope honestly. I think he will end up putting the phone down on me. Remember my rheumatologist is the one who said "I am the specialist. I am the one who decides wether to give you the medication or not. I am in charge of your health"!
And yes he brought a nurse in to the room while he said it as a witness because I was crying!
So guys wish me luck please keep everything crossed for me please 🙏🥺 let's hope I can write some good news tomorrow as I am about to loose my job to this illness in April so if he doesn't back me and make me better iv lost my job of ten years.
Good luck for tomorrow Nikki🤗Sounds like u have done a lot of groundwork already n you're all prepped for this much needed appt!!
I had a recent rheumy appt n it was our first meeting..he was a bit big n bullish but I found that when he fired a question at me..I took a while before I answered..couple of breaths just to calm my thoughts a bit helped me get through it!!
Glad to hear u got appropriate aids to help u from OT as well..onwards!!
Hi,I hope things go well tomorrow.I’m nottelling you how to suck eggs,but is your list at the ready. with spaces for answers and spare biros at the ready.
I always tick stuff as it’s. Covered,then what’s what’s left bring it up at the end if there’s time..
My rheumatologist always asks, is there anything else ?
Oh that is awful! Did he really say that? “I’m in charge of your health!!” I’m hearing so many stories like this it’s very distressing. Sorry not much help to you.
I’ve posted about this before, but you can have Lupus with negative ANA I have. My diagnosis is as my expert professor in Rheumatology said is “watertight” confirmed by a positive double stranded anti-DNA test. My ANA has been negative and at best weakly positive. It’s rare but possible. I too almost had my diagnosis removed because of it by a junior doctor. The head of the St Thomas Lupus unit confirmed this is incorrect & I definitely have SLE.
I really wish you good luck tomorrow. However, if he isn’t helpful I wonder if you GP can get you a second opinion. What part of the country are you in?
SLE can be a subjective diagnosis without blood tests like anti-DS DNA to prove it. The main thing whatever name they give it is the treatment you get for the symptoms, which is not leaving someone on relatively high dose steroids & not following up.
Hopefully others will reply too. The ANA is really tricky because some consultants seem so fixated on a positive= Lupus. Let’s see what others say.
Good luck tomorrow 🤞🤞🤞
Thank you everyone. I really appreciate your thoughts and hugs and good lucks lol.Panther 50 I'm in shropshire. I have thought about a second oppinon but the trouble here is they just get their "collegue i.e friend" to repeat the original diagnosis word for word.
If this fails as I think it may. I'm going to have to pay to see a private lupus specialist. I think I'll have to see professor dela cruze in london. He seems very forward thinking. I have 7 out of the 11 points of lupus diagnosis. When bloods are dealt with I may end up with 9out of the 11 points. So it's really frustrating. And may end up being very expensive too! We will see tomorrow. Thanks again everyone 😁.👍😁🤗🤗🤗🌈
Hi Nikki Sorry to hear of your troubles with your rheumy. We too are in Shropshire (it is my wife who has Lupus). After 20 years of good RA treatment she was diagnosed with SLE in autumn last year and put on hydroxychloroquine. We too are in a dilemma as we are not sure of the ability of our rheumy re-SLE, he has a very good "bedside manner" but being chatty does not necessarily mean that they are fully capable of fixing the illness. Currently, we have not heard a word from the rheumy since before last Christmas even though my wife is still in pain every day, cannot walk more than a couple of hundred metres, and cannot do even the smallest tasks without being knackered. Only this morning she managed to get her coat on herself (I usually help) and then had to sit down to recover. I have rung the so called "help desk" twice now, since Christmas, about the ongoing pains all over -- simply to be told to take more paracetamol. To me that is just a temporary fix and is not getting to the root cause -- a sticking plaster job. We have no scheduled appointment so just do not know whether we have been posted to a very large pending tray. There does not seem to be any plan to monitor health or condition on an ongoing basis. It feels like we have been left to ourselves or abandoned. After hearing your story I am a little more worried whether we will ever get another appointment. Just hope that our story shows that it is not just you.
I do wonder how many other people have lupus in Shropshire? It would be good to compare notes to see what the overall perception of the treatment is. Sadly being so far out in the sticks we do not have much alternative.
I do hope your telephone appointment went well, but I am sceptical. I cannot see how any Dr can assess your condition thoroughly (after 12 months) without actually seeing you with their eyes and looking/feeling your joints, and rash etc. It is odd that despite much preparation before an appointment, when it actually happens we get tongue tied and we are either out of the hospital or off the phone thinking have we got any further or any answers?
The very best of luck anyway --- keep your chin up!!! -- most important.
Thank you beemanshrop.Don't give up hope. And don't stop phoning rheumys. My rheumy stuck me on 20mg of steriods last March and then left me! When he saw me last year I was skeletal 7 stone. No muscle mass in arms and legs. I got dressed (with hubby's help) that morning in my size 4 jeans and a straight tight tiny long sleeved top. My husband said "you look like you have anerexia nikki you look like your dieing"!
When rheumy saw me he said that's the best he's ever seen me I looked lovely!!! He wrote in a letter to my gp " she looked fine to me"!! Idiot even I could see in the mirror how ill I looked. My youngest son would cry and hug me when he saw me. He's 28 years old.
Iv put an update on here how I got on this morning to see if the appointment went good or bad. He's not done much but he was very nice to me. But now as you say being chatty and nice doesn't get to the root cause does it? I also agree I wonder how many people in shropshire suffer sle ect? Perhaps we can push for better treatment if there is enough of us hey?
I'm about to loose my job I thought he may back me with a letter as I'll need to claim p.i.p. god I am dreading that after hearing people on here. Nightmare on its own. Rheumy didn't care how disabled I am now nor that my breathing is irratic and chest pains and huge tremor. He said don't worry!!
I'm having my 2 yr old granddaughter today for 4 hours. My husband has to get up off night shift and look after her as I can't. I can't lift her play in garden. My hubby does everything. I feel for you with your wife. I feel so bad for my husband of 33 years. But he says he loves me more now than ever bless him. So big up to the husband's and wives that look after us. I don't know where we would be without you.👍🤗🤗😁💖
Love to your wife. Tell her she can talk to me whenever she wants as you know . We don't have anywhere to go lol.
Good luck today! We will be with you on spirit. You do not need a positive ANA for lupus diagnosis with all the other symptoms and if he insists, tell him it’s an outdated theory and recent studies have found that 30% of people with long-standing lupus ANA will be variable and sometimes negative.
And you’re so right it’s about finding the markers for YOU! That’s very interesting about your CA125 being a marker for you. It is for me too but it took years and a cross gynae (I kept being sent for ovary scans) to get them to realise it’s an inflammatory marker for me. It’s a very good one too. What does yours go up to? Mine used to be about 70 when flaring/ infected but recently it was 128 which caused panic but it soon went down on steroids.
Your rheumy sounds a tough case to crack. Appealing to his ego? Being firm? Or being sad that you just want to get better? Very hard to know which approach to take and why should we have to do I sometimes think. Why not just teamwork and them helping as much as possible without egos etc.
If he continues with a ? Over your lupus then say well what is it then making me do unwell?!
There’s not many, but I’ve come across enough to make it worrying & I’m hearing more and more of it happening- male consultants who treat female patients as hysterical and just making a fuss. It’s misogyny. Being told “I am in charge of your health” is a red flag. A long term health condition can only be managed collaboratively & ultimately of course it’s down to the patient. Imagine if you had diabetes and you took no part in managing your condition because your dr was in charge of it! I’ve experienced it with male drs myself several times in my life (not just for lupus) and there’s enough stories here to show how many other women are coming across it too. It means you have to fight to get the treatment you need at a time when you are least able to fight. I’d like to know what the NHS is doing to address this institutionalised misogyny. We shouldn’t have to tie ourselves in knots & second guess our doctors just to be heard & get treated.
Hi panther 50I totally agree! It's such hard work. I had one male gp years ago say to me ohhhh I bet your hubby is happy. I bet he loves that!
Because I went to him at 36 producing breast milk!
9months later I plucked up the courage to go back to the gp. I saw a female dr. Imediatley she sent me to a breast clinic. I ended up on bromocriptan to control the over production of prolactin from my patuatory gland!!
Yes I know I can hear you spiting from here lol.
I can honestly say I have learnt ALL I know from here! That is disgraceful. My rheumys told me nothing.
Thanks for your response. As iv said it's wonderful to know I am not on my own. So thank you 💖 xx🤗
Hi melbaWell how flipping amazing that you and me have CA125 markers as our imflamtion markers. I honestly can't believe there is someone else like me!!
Yes iv been told since 2019 I have ovarian and possibly bowel cancer too! I made christmas 2019 as special as possible as I knew it would probably be my last as I was 7stone very frail and weak. I started writing my 2 year old granddaughter all her Christmas and birthday cards for the next 21 years too. Then my wonderful gynocologist noticed it's MY inflammation marker. I could hug her now. Lol my markers have been up to 60 so far.
Yes I agree I too know 30% of lupus suffers don't have positive ana. He is a very in the box kind of rhyeumy. However I'm just going to do a post now for the group and let everyone know what happened this morning!!
Lol see what you think about this!!!!
Thank you sooo much for your response. Not only is it lovely to have support but to know I am not alone and on top of that other people are going through the same thing.
YES I AM NOT MAD! And I am not alone. Thank you ❤️☺️ and thank you again. Xx
Hi Nikki, my heart aches for you. Why on earth do these consultants get away with being so utterly pompous? I am so very sorry for your suffering and truly hope that your telephone call goes well . Head up lovely you have got this xx
Aww thank you cecily. Your words have really touched me. Iv put an update up. Can't type now I am so exhausted. But I just wanted to reply to you 🤗🤗🤗🤗🤗👍 thank you xxNikki
Nikki, I hope things went well for you. Isn't there something about "Physician, do no harm" or did I make that up. Some doctors have no clue of how insensitive and cruel they are because they don't have answers. Revolting! Hoping you will be posting soon that you were listened to and treated the way you should be.
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