Bone Profile test

[CecilyParsley]

Hi there everyone. I hope that you are all having as pain free a day as possible. I had a full blood screen done on Monday and today the surgery rang to request a repeat of my bone profile test. I have never had this before and was wondering if anyone had any ideas as to why I would need this?

[KellyInTexas]

If you have been , or of your doctors are even considering placing you on steroids it’s important to have a baseline.

Same applies with some anticoagulations if APS is still being questioned as a contender.

[CecilyParsley in reply to KellyInTexas]

I have not been on steroids for about ten months Kelly. I take aspirin for the APS. Currently I am in no man’s land diagnosis wise. After ten years of treatment with Hydroxychloroquine for Lupus and with definitive and multiple diagnoses of Lupus, APS, Bechets my last Rheumatologist said all I have is Fibromyalgia. My GP requested clarification and a Rheumatologist who diagnosed me in 2009 responded that I should re start the Hydroxychloroquine for my MCTD. The new Rheumatologist then sent an email stating that I should not restart it and that he was discharging me. My GP complained and now I have been sent an appointment to see a different Rheumatologist at a different hospital. Meanwhile I have been re referred to Urology, Continence Service, Maxo Facial Department and I feel dreadful. My pain is increased, my exhaustion means I am sleeping my life away, after nine courses of antibiotics I am still burning, my tongue and mouth is ulcerated, my genitals and anus are ulcerated, my vision is blurred, I am extremely clumsy and covered in bruises, my feet and ankles are so swollen I cannot articulate my ankles so I am falling a lot. Sorry I am just exhausted and totally miserable. Thank you for responding Kelly xx

[MEGS53 in reply to CecilyParsley]

Oh CP, you really are going through it. I'm so sad that your GP are rheumies aren't more helpful...

On a practical note, perhaps the blood test included those for vits/minerals and showed your levels were a bit low? In any case it's a good idea for 'women of a certain age' (hope I'm not being insulting here??!) have their bone density measured. I had mine done recently, it's totally painless and the machine looks a bit like a huge photocopier that moves over you slowly. At least your GP is moving on this one - small mercies, eh? Sending gentle hugs, xxx

[CecilyParsley in reply to MEGS53]

Not insulting at all. I had a total hysterectomy at 40 and as I was asthmatic and on steroids I took regular medication and had bone density scans, what is strange is that since I became very unwell due to my Lupus diagnosis in 2009 my asthma stopped . Hence no more meds or scans since. You are right in that I am relieved that my GP is at least testing me. I just thought I would check with you lovely lot to see if anyone knew what a retest might indicate. Thank you for responding xx

[MEGS53 in reply to CecilyParsley]

I just hope you get some relief and help soon. xxx

[CecilyParsley in reply to MEGS53]

Thank you Meg, much appreciated xxx

[Melba1 in reply to CecilyParsley]

Oh I’m so sorry you’re having such a horrible time, no wonder you feel miserable with all those symptoms and your awful experience with that rheumatologist ☹️ Is the new rheumy appointment soon? Would your GPs try you on steroids for a bit to tide you over? Have you shown them/ rheumys the genital ulcers? I find when I’m inflamed/ ulcerated there it gets a lot of quick sympathy and action because it looks so sore and everyone can imagine how awful it must feel (my GP nearly cried when she looked before and immediately wrote to a dermatologist to say you have to see her soon because it looks so sore! It actually wasn’t as sore as it looked - unlike most things with lupus which are normally much sorer than they look! 🙄)

I know it’s hard when you have so many different symptoms and the fatigue is so crushing but can you look at each symptom and see if you can make some a bit better individually whilst waiting for specialist help and treatment that will hopefully work on the underlying autoimmunity and improve everything?

So seeing dentist for mouth ulceration and getting steroid cream for genital ulceration (I use dermovate), optician for eyes and maybe some dry eye drops as can all be connected.

Is the swelling in your feet/ ankles from joints do you think (painful bone feeling?). Have your GPs tested for protein and blood in your urine? You can get dipsticks on amazon, I do this when I swell up as is often related to protein in urine. Can you persuade diagnosing rheumy who wrote to say go back on hydroxy to see you quickly?

Or go and lie on the floor at the GPs. I did that once, I just felt I couldn’t even sit in the chair to talk to them. They sent me to hospital and I got IV steroids and felt a lot better.

Wishing you much much better soon xx

[CecilyParsley in reply to Melba1]

My Rheumy appointment is a week today. I never have the damned ulcers when I see the GP because there is a three week waiting time for an appointment and they do not class genital ulceration grounds for an emergency appointment. My dentist has referred me to the maxo facial team because my Rheumy and GP have done nothing for my mouth ulcers and TMJ symptoms. My GP has at least re referred me to Urology and for a bladder scan. I have had a lot of protein and blood in my urine hence the nine courses of antibiotics. The swelling in my feet and ankles comes and goes. They are loathe to put me on routine diuretics but I really struggle to walk when they are so tight and stiff. I doubt whether the Rheumy would agree to re start the Hydroxychloroquine since I have cysts on my maculars. They are too small to warrant treatment apparently. I am using Hyloforte and Carboner eye drops for the dryness but my vision is so blurred. Thank you so much for the advice. I do feel quite overwhelmed and lacking in backbone at the moment xx

[Melba1 in reply to CecilyParsley]

Not at all surprising you feel overwhelmed ☹️ Fingers massively crossed this new rheumy is the one who will make a big difference.

I have had similar problems with blood and protein in urine and multiple courses of antibiotics. I’ve had nephrology, urology, rheumatology, immunology and infectious diseases team all debating whether inflamed kidneys are from infections or from the lupus itself. I think the ‘agreement’ now is that it’s both. They said if you have a lot of protein in urine that’s normally more the lupus rather than infection. So hard to know and infections can make you feel awful and very down too and infections can start the lupus flaring. It can become a difficult to untangle vicious circle as the infectious disease consultant told me. We are difficult cases but hang in there, it will get much better than it is now once you find the right person to help and get on some proper treatment.

That’s rubbish of your GPs as with these relapsing/ remitting symptoms we need to be seen when symptoms are active. Can you speak to the practice manager and explain? I now have on my notes that I need to be seen immediately.

Taking photos of that area is difficult and can be embarrassing to show the doctors but I have one saved on my camera now so if it’s not flaring at that appointment (or I or the dr don’t fancy looking directly 🤣) I can still show them. Although one of my poor teenage sons is traumatised from flicking through my phone holiday photos and coming up with that one 😱🤣 I expect my young male rheumy would be pretty traumatised by it too so I’ve spared him that dubious pleasure and just shown to dermatologists or female consultants but in your case where they’re debating diagnosis it’s important to show everything as may help you get the right treatment?

Good luck next week. I always type out an ‘agenda’ of what I want to discuss and give them a copy. Some like it, some don’t but it stops me forgetting and keeps us on track. I also write on my copy ‘what not to leave without’ which varies as to whether it’s them actionning a referral, a new medication or a question I want answering. Otherwise sometimes we can leave these appointments and not achieved anything and have another few months of suffering before discussing again. And don’t be afraid to ask for a quicker follow up appointment if they try and say they’ll see you in 6 months. You’re very unwell and need quicker help.

Xx

[CecilyParsley in reply to Melba1]

Oh thank you for the giggle. I know only too well how photos of my various bits pop up on my husbands phone at times. I do not think there is one bit of me that has not been photographed. We did try the genital photos but they are blurred from both of us laughing. I did show the Rheumy but he just shrugged. Thank you for your advice it is very sound as I so often emerge from appointments having achieved nothing at all xx

[Melba1 in reply to CecilyParsley]

Well your husband is clearly better than mine (and less squeamish!) to be willing to participate in such photography! My husband gags and/or looks appalled. I have a horrible, yet slightly amused, feeling my rheumatologist would do the same if shown 🤣

Another similar story to cheer you up. I was at a dermatology appointment a few weeks ago, I’m seen regularly by a very headmistressy, very competent lady consultant who thinks I’m severely cognitively impaired because once I walked out knickerless and shoeless and had to do the walk of shame back to retrieve them 😬🤣 ever since she has spoken very slowly to me 🙄. This time was a new young male consultant who was brilliant, spent over an hour talking about the lupus and then said he’d better look at the bleeding/ ulcers down there. As I was the last appointment, he couldn’t find a nurse to chaperone so went pottering off but the place seemed deserted. So I popped my head out of his door and shouted up the corridor to him ‘don’t worry about a chaperone, I’ve been showing my front bottom to people (why I said people when of course I meant only DOCTORS 😱🤣) for years, I’m not at all embarrassed’ He then looks at me with a 😬 face and then looks into the waiting room next to him where there are several patients... I made it worse by then finding it very funny. I think it was embarrassment but I then couldn’t stop. He didn’t laugh at all and I haven’t received his letter yet, probably something about inappropriate behaviour and laughter 🤣

I shall be willing you on in your appointment next week, so hope it’s a lovely rheumy who gets you much better xx

[CecilyParsley in reply to Melba1]

Omg you are such a star. I would have found it hilarious too. When I was undergoing a bladder stress test the nurse was a very stern woman who started to lecture me on drinking too much water. My flow once released nearly broke their machine lol. Then came the catheter but. I was lying down and she was fiddling away and it was getting uncomfortable down there. She started tutting and sent a junior nurse to get another tube. Again more fumbling and now three of them staring intently. She was clearly exasperated and said very sharply have you been rubbing yourself down here? I roared with laughter, promptly letting out the loudest fart then wet myself. Omg she could not have been more disgusted. The other two nurses were giggling too. She flounced out while they mopped me up and put a blanket over me. Once she had gone the young nurse said you are bleeding down there now. I said what the hell did she think I was rubbing myself with a Brillo pad? We were all giggling uncontrollably when she returned with my Consultant, a very straight laced professor. I really tried not to giggle but the sheer embarrassment of it all made me worse. Next thing the door burst open and my poor hubby thinking something had to be very wrong comes charging in. We often laugh about it now. I was near hysterical as the three men sitting in the sub waiting room got a birds eye view of my ass. Not pretty. 😂😂Turns out I have a diverticulum in my bladder.

[Melba1 in reply to CecilyParsley]

🤣🤣 oh thanks for sharing that, I’m still laughing this morning! Although in many ways not at all funny, ‘rubbing there’ ?! So funny you responded what with a Brillo pad 🤣 Shows the lack of understanding we’re faced with sometimes when we have unusual symptoms 🙄 I’ve had problems there since I was little and I can remember so clearly a gynaecologist when I was 8 asking my mum and me if I was the sort of child who may have been inserting foreign objects there. So my 8 year old brain thought ‘foreign objects’ must mean toys from Taiwan! (as that was where loads of toys seemed to come from in those days). My mum explained that some children put objects in various orifices and I couldn’t comprehend it (until one of my sons put 30 peas up his nostril one day... 🙄🤣)

I think the desire to laugh is made worse when it’s a bit embarrassing and particularly when they’re so serious and stern like your nurse 🙄I’m even worse now because ‘inappropriate laughter’ is one of the signs they use to see if the lupus is active in my brain (I can get a bit drunk acting and silly 😬🤣) so I’m desperately trying not to laugh which just makes it worse, especially when they look at you so sternly and seriously! Sometimes even when my brain is fine I’d still find those sort of things very funny! But I know they’ll then put me on a steroid drip 🙄 when I think it’s them sometimes that need a learning to laugh drip... 🤣

I sometimes think we should put all our funny medical stories together and make a book 🙃

Xx

[CecilyParsley in reply to Melba1]

A book would be hilarious. Honestly I used to smile and laugh all the time before I got ill and I lost both for a long time. I seem to be hypersensitive to noise and light now too and one of the funniest things ever was that I joined a gentle exercise class in a local leisure centre, known affectionately by the young people as the old fart and cripples club . I was walking round the gym area with a lady who had had a stroke and a lady with cerebral palsy..our warm up I kept saying what is that noise? lol three of us would stop listen intently, hear nothing then start walking again. The noise strangely started as soon as we moved. I completely lost the plot when I realised what it was...revenge of the nappy that crinkled like a crisp bag every time I moved. Hilarious. The others could not understand why the tears were rolling down my face with mirth or my unintelligible babble but they laughed too. We continued to laugh loudly all through the class. The next session I was paired with an extremely shy gentleman who had had a stroke. Both of us used sticks for balance. We had a badminton net and had to throw a ball over to the other person. Now my aim was poor before I became ill and poor grip and poor balance has not done me any favours in that department. I lobbed the ball as hard as I could to get it over that net. Both myself and the trainer watched in horror as the damned thing smacked my partner on the head then jettisoned off hitting a man in a wheelchair who had fallen asleep and woke with a loud snorting noise. I fell about laughing while the trainer in his anxiety rushed around checking my two victims were ok, removing the ball and the sticks of the man with the stroke. He started yelling loudly at him cone this side of the net. I pointed out between wiping tears and snot from my face and unknowingly rubbing black rivers of mascara all over my face that if he gave him back his sticks, he might just be able to do as he asked. By now the whole group was giggling. I found my giggle again and I loved it. Sadly when my knee dislocated I had to stop attending class but as soon as I can get over this awful exhaustion I will return. We really should start two books, one for the sad, desperate, miserable times and one for the ridiculous and hilarious times . Thank you so much for making me giggle again..it has been a while. Bless you for your kindness and your amazing outlook on life. Strangely I was under a gynaecologist from the age of eleven. Xxx

[Melba1 in reply to CecilyParsley]

Definitely like the sound of your ‘old farts and cripples club’ Just what we all need, especially with you there to entertain us all with hitting everyone on the head 😍🤣

Oh that exhaustion is just the absolute worst ☹️ Feels like you’ll be stuck in it forever sometimes doesn’t it? But we rarely do once we get right treatment or even sometimes it just lifts as suddenly as it arrived I find.

Definitely a book needed for both experiences, maybe one of those flip over ones where half is the funny stories and have the grim ones? Keep the laughter up. Maybe not so much they lock you on the ward... 😱🤣 Mind you I didn’t laugh today at my rheumy appointment 😬 At least I wasn’t told off as I often am for not listening 😱🤣 but it was a bit depressing hearing all the bits that were failing and how we were running out of options 😬 But I’m very lucky to have one who genuinely cares and does his best to try and get me as well as possible which is hopefully what you’ll get with your new one this week

We’re all here with you willing you to have found an amazing rheumy and to get some relief. Let us know how you get on please xx

[DJK99 in reply to Melba1]

Melba - i’m not on here much any more for one reason or other but wanted to say how wonderful your response to Cecily was here. Perfick!

[Melba1 in reply to DJK99]

I’m not on here much either but do think about you all A LOT and willing everyone towards better health and good medical care xx

[stiff19 in reply to CecilyParsley]

Dear Cecile so sorry you going through this. So glad your go is good and behind you, I have similar problems and told fibromyalgia. It seems to be the in thing , it is utterly absurd, I was on hydroxychloroquine and found they helped my rheumy decided for me that they didn’t , undiagnosed palandromic rheumatism and diagnosed fibro. Since I suffer more symptoms and have no gp as my gp or surgery don’t believe in referrals it seems. I feel your misery with you and tenfold, hang in there Cecily hang on to your gp and most of all take care and push forward. I really can’t help but think something is behind all this fibro throw around , I wonder if as a diagnosis it’s cheaper to treat? Something is very off with this.

I have mouth ulcers and a first genital one today 🤔

I hope you don’t have to wait too long to see new rheumy and get sorted . You will be in my thoughts take care 🤗🙏xx

[CecilyParsley in reply to stiff19]

Thank you so much. I am so sorry that you are suffering too. The genital ulcers are the most painful. I am incontinent and the urine and nappies rub and burn. I agree with you about the Fibro. He asked me if I slept I said not a lot so his view was well you have Fibro whether you like it or not. His parting shot was if you get ill you will prove me wrong?? I do not take it personally because I know of at least two other people he has said that to. I see the new Rheumy next Friday. Take care of yourself xx

[Aria_1008]

Hello, I had one to make sure there wasn’t no bone damage as I have been taking steroids for three years. This was not through bloods but a actual 30 second scan in hospital. I have one in bloods to make sure no other damage caused by methotrexate. It could be to monitor side effects from your medication? I hope it all becomes clear x

[CecilyParsley in reply to Aria_1008]

Thank you Aria xx