Lupus, not sure?

Hi

I am new here so please bare with me if I am a bit long winded. It is just I really don't know what to do.

I have had numerous Lupus type symptoms which include : a very faint blush which comes and goes across the bridge of the nose and cheekbones, aching limbs, hair constantly shedding, dry eyes/ light sensitive , blurred vision, twiching eye, although passed recent eye exam, fatigue and exhaustion more so if there is a virus/bug around, irritable, low mood gastro problems to include slow motility, pain, bowels constipated can be loose at times too. weakness in hands and legs, at times stiff finger joints, and just recently dizziness to the point where I almost collapsed and brain fog. Heart pain.

Diagnosed with:- Neutropenia, gastrpareisis , pericarditis, mild anaemia, weakly positive ana, raynauds

The problem is I don't think my doctors are joining up the dots so to speak. They I feel are "watching and waiting" with me. It comes across to me that they are only interested in their particular field and are not looking at the big picture. Should I go private? Would that help ?

Thank you for taking time to read my post

Midge.

26 Replies

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  • I was diagnosed in 1980 with Lupus. I was in hospital last year and a Rheumatologist told me I didn't have it. I forget now what the specific blood test is he mentioned but I told him all those years ago it wasn't in my blood but I had and still have every other symptom. Didn't want to know. I had told his nurse in great detail all my symptoms in front of my husband who agreed with everything i said at an appointment this week, she went to talk to him and he came back with the usual, its not in your blood. On the screen I could see several lines in red and wanted to know what they were, was there maybe a different diagnosis now? No such luck he just packed me off to have another blood test for something he said "you won't have either" and that was that. Totally discharged and left on my own with it. Having re read your post I think it was the ANA he was talking about but to my understanding although the vast majority of Lupus sufferers have this about 3% don't.

    I truly empathise with you and wonder when your next appointment is. I can't advise you about going private but it is possible that you might end up seeing one of the doctors you have already seen, just in a private clinic. Can't offer advice but i can offer understanding and friendship if that helps.

  • Hi Lynne :)

    I am so grateful to you for replying to me. I totally and utterly understand where you are coming from. It must be so confusing to get a diagnosis of Lupus and then have another specialist tell you that it is "not in your blood" !!!!

    I hope you are managing as best that you can.

    My G.P wants to speak to me next week regarding my blood. I have a gastro appointment the following week and I am awaiting a specialist Opthamology appointment soon (I hope.)

    I am sure you are right. I probably would see the same specialist. However I have never been referred to a Rheumatologist. I ( as I am sure you know only too well) just want to try and speed things up. Although I have had noticeable symptoms since my late teens the last three years have not been the best shall I say.

    Friendship is always good

    Thanks.

  • I'm so sorry to hear you are going thru this. Lupus is hard to diagnos and I've heard so many others with similar stories. For me I had symptoms for at least the past 12 years. They weren't very severe so I didn't think much of it and just continued on. About 4 years ago things started taking a turn and since then has progressed quickly and drastically to the point I've lost most of my ability to function and has to stop working in December. It took 3 rheumatologist before I found a good one who actually started treating me agressivly. Part of my problem is I'm one of those 3% without the positive ANA. Some rheumatologist won't treat you without it even thought physically you feel like you are dying. I had one that said sounds like Lupus but with out the ANA I won't treat you. Go back to you doctor and let them continue prescribing NSAIDs, steroids, and pain killers and we will monitor it. After I continued to get worse my doc sent me to a different rheumy. This one diagnoses with Lupus and said yes you can have it without a positive ANA and that I needed a specialist to treat me but then he wasn't very aggressive and because he was 3 hrs away from me, when I would get sick he would just call in more steroids and tell me to go see my doctor. He also messed me up greatly by making me try different NSAIDs, some that didn't work and some that I had bad reactions too. So about another 6 months later and increased disease activity my doctor decided to consult with the biggest rheumatology department in our state and start treating me more agressivly because things were getting so bad and I was suffering. So she put my on plaquenil at the advice of the rheumy department and was told that if it didn't help enough she could also start something like methotrexate. She finally found a really great rheumy for me. Who upon seeing him said that my lupus should have never been aloud to get this far out of hand, but he wasn't surprised by the amount of ridiculousness that went on with the other rheumatologist because my case is complicated even for Lupus with overlapping diagnosis. Now that I'm seeing him he is treating my agressivly and has me getting biologic infusions called Benlysta. It's the only treatment specifically for Lupus and the only new treatment in 56 years. I've shown some improvement since being on this treatment but still having a horrible time controlling the disease. Lupus is such a hard unpredictable illness and can feel so hopeless at times. Doctors don't even truly understand it and that's why it's sometimes so hard to get a proper diagnosis and treatment. I know this is a extremely long winded response and I'm sorry but I think the story shows just how long it can take to find the right doctors and how even with good doctors it can be quite a struggle. But hang in there and don't give up. I know we all have positive days and then days we feel like we can't continue on. But one day at a time and we will make it. I still fear something happening to my GP and current Rheumy cuz I couldn't imagine having to go thru all of it again to find new doctors. If it wasn't for the persistence of my GP and her knowing me for so long and being able to see such a drastic change, I fear I wouldn't have been treated and would be in severe organ failure by now. I know the struggle of trying to get them to listen to you, and some days you just want to give up. But keep looking until you find the right rheumy and things will get better. Hope I didn't use up all your energy on reading this post. Lol ☺️

  • Hi midge

    It can be a long and painful road to a diagnosis sadly. Sorry to read you are struggling with lots of different symptoms which gives the problem of having to see several Consultants who keep to their own area of expertise and only talk to each other if they are in the same hospital!.

    With your symptoms and positive ANA you should ask your GP for a referral to a Rheumatologist who will run more specialist blood and other tests before giving his/ her thoughts. I'm interested you've had pericarditis, whose been treating it and how?. Good luck for your eye appt too and I hope I've helped. X

  • Hi Misty,

    Thank you so much for your response :)

    Yes I feel that is the way I should go with a referral to a Rheumatologist however I am not sure how easy that will be as my G.P is quite difficult . I had to beg her almost to get her to send me to a Cardiologist here in Scotland.

    Last year, when I was diagnosed with chronic pericarditis.

    I was told basically to take pain medication and rest until it subsides which for me is usually around 3/4 days. I manage it quite well. I have had this for a number of years.

  • Hi Midge

    I'm sorry that your GP is difficult because strictly speaking she should have offered a Rheumy referral when your ANA result came back positive. This shows there is something going on with your immune system!. Have you thought about changing GP's as you really need a supportive one?.

    I too get Pericarditis and it is very painful isn't it?. What painkillers do you take?. I find extra steroids work best and it settles within 3-4 days like you. I've had it five years now, took them a long time to realise what it could be!. Was that true for you as I think it's quite a rare symptom?. It's horrible when it strikes isn't it?. What tests have you had?. Good luck for when you see your GP, it's your life and body going thru all this not hers!. X

  • Hey Misty,

    Yes !it can be very painful and extremely frightening in the beginning when I did not have a clue what was going on. For me that symptom started shortly after the birth of my first born ( around six weeks) so rather stressful. Wonder if child birth or hormone fluctuation may have triggered my "Lupus"flares.) It was first diagnosed as a forceful beat ?? as then I did not experience any pain, that developed later.

    It wasn't until early last year that I was diagnosed with chronic pericarditis.

    As I have gastro problems I have to be careful with medication and try and take as little as possible to protect my stomach. It was recommended that I take Paracetamol and just rest . I can also tell through experience when it is usually going to be bad so I temper my day around that.

    I really took along time for me to be diagnosed with that too!

    My G.P insisted that it was probably just chest pain coming from the lung area. I actually suggested to her that it may be pericarditis to which she replied " you would be dead by now ".

    Really, can you believe that one !? Needless to say she got mixed up with endocarditis which indeed untreated she most certainly would be correct. I remember holding strong insisting it was heart pain especially when inhaling . I think at that point she was extremely fed up with me and I got my referral.

    I had all sorts of tests including treadmill (wired up) different scans,some with chemicals, I am not sure of there names. I was diagnosed after those tests.

    Thanks again Misty :) x

  • Hi Midge

    You are spot on right that symptoms can appear or be exacerbated after childbirth!. Shows the important role hormones play in these illnesses!. That must have been very frightening for you!. Tough you say how painful the pericarditis is yet you can only take paracetamol!. I too have gastro problems but take Losec to help my tummy and have to take stronger medication for the chest pain, mine can worsen!. I'm interested you've been told chronic pericarditis, didn't think that was possible!. How often do you get an attack, can't be easy resting with young kids!. I agree with Purpletop that you having this alone should have made your GP refer you to a Rheumy as it needs monitoring!. Good luck for when you see her. Sounds like she does have knowledge of these illnesses because she got the difference right between the heart problems, sad she doesn't have the right attitude!. Take care. X

  • Hi Misty 14,

    My pericarditis I dare say is not as profound as what you are experiencing. Thankfully !!! I usually get an "attack," if there is a bug around. Oddly I can usually tell if a member of the family has a virus working on them as it will affect my heart first .....!

    I am sure that my possible "Lupus" symptoms also trigger it, as does Hayfever so not great at the moment.

    My children are teenagers now so they do their best to understand, maybe not fully of course, but they do try. It is hard for them to understand I suppose when I appear outwardly perfectly healthy.

    I also have a very patient husband whom I am sure I have pushed to the absolute edge at times ( I would have left me by now :) ) This not knowing is pretty hard on everyone.

    Sometimes I wake up and think O.K what system in my body is going to be messed up with today ??

    I take Lansoprazole and domperidone for my gastro complaints.

    My G.P can be blunt. Best to stay on the right side of her :)

    Take care Misty :) x

  • Hi Midge

    We are so similar, my chest is affected when there is a bug about, you have mothers intuition built in!. I'm pleased you have a very supportive family, that's so special and needed , shame about your GP!. I'm also interested you say possible 'lupus'. How long have you been trying to get a diagnosis?. i've been Undifferentiated CTD for 28 years!. Only just learn't what this means. It's more of a diagnosis than I thought!. It can be such a long, hard road to recognition. Good luck for your GP.X

  • Hey Misty14,

    Yes! We have a lot in common .Can you believe it my fifteen year old daughter last year has been having very similar symptoms to myself so I had taken her to the doctor who took some blood, long story short , turned out that she may have a connective tissue disease. The specialist Child's Rheumatologist told her that at the moment her blood was good however she had tested positive for ANA twice and that she would continue to monitor her as "these things can smolder"

    I like my daughter have had symptoms since puberty when I come to think about it but I really knew something was not right at all just after I gave birth to my son in 97. I became very unwell.Each time I visited the Practice I would usually be seen by a different doctor, who would run bog standard blood tests and the results were "unremarkable." I just got so disheartened that I gave up going back!!! and struggled on as you do. until three years ago ( I was 49 last week:) )

    Midge :) x

  • Hi Midge

    Happy Birthday for last week, hope you had a good celebration, big one next year!

    So worrying about your daughter but interesting as it can be hereditary. !. It's good she is being monitored because like you too I started being ill at puberty and over the years I had 2 positive ANA's like your daughter and been monitored. Like her Consultants comments about it smoldering!. Is she being treated , tough for schoolwork, is she doing GCSE's? You need to get yourself to a Rheumatologist, you've been badly treated by the GP's!. Think of it as a new start for your 50 th!. I'm 43 so we're close in age. Good luckX

  • Hey Misty14

    Sorry I did not get back to you before now but it has been a busy week!!!

    I wish Misty I could be seen by my daughters Rheumatologist as she has a great manner with patients. All tests and their results are explained clearly during her appointments plus I get the feeling that she Is actually interested in her.

    I have been given a list of Rheumatologists in my area which I will look at then hopefully get an appointment with one.

    Fingers crossed!!!

    How are you feeling at the moment? Do you know what triggers your Lupus symptoms Misty?

    Take care,

    Midge :)

  • Hi Midge

    Don't ever worry about not being in touch, your ill and a busy Mum, good reasons!. It's funny you saying how good your daughter's Rheumy is because I was going to say to to you could you go to hers!. She sounds very good!. With your list of Rheumy's you could ask on here if anyone else goes and how they find it. Help you decide but I guess you need one closest to your home!. I find stress, infections, sun and being extra tired can all trigger a flare!. Just coming out of one now thanks to a finger infection!. Hope you have a good week, school hols now!. Take CareX

  • Thanks Misty 14 :)

    My daughters Rheumatologist specializes in children unfortunately for me, however my husbands colleague has Lupus and it was through her that I got the list of specialists.

    I am positive that infections trigger me as well oddly it is not the infection that necessarily makes me feel bad but the inflammatory symptoms that spark up because of it... and there is no telling how long it will last either.

    Stress, lack of sleep sun ( not much of a worry here though :) and allergies also affect me as well.

    Sorry about your finger! I that hope that you can manage especially with the children on holiday.

    Speaking of which have a great time too :)

    Midge x

  • Hi Midge

    How has your week been?. Have you decided on a Rheumatologist you'd like to be referred to?. Not easy to decide, great you got the list from your husband's work colleague who has Lupus. Who does she see?. More and more people either have Lupus or know someone who has!. Awareness has made such a difference!. I hope you feel as well as can be, can you go away these hols?. I don't have kids so school hols not a bother. Finger is much better thanks and I'm recovering well from the flare, trying to reduce steroids which isn't easy!. Take CareMistyX

  • Hey Misty :)

    I have not decided on a Rheumatologist at the moment, I think I will probably ask to see the Rheumy that my husbands colleague attends, if that is possible.

    It has been a busy week with me. I had an MRI of the abdomen done so waiting to discuss this with my specialist.

    It must be sooo hard to come down from steroids. Does your doctor help you manage this?

    This week I have been especially fatigued think I maybe in "flare mode" too! No doubt stressful hospital appointments have something to answer for.

    We are not going abroad just now but we will try and head to Skye for a week maybe. I just love to explore castles ( I must have been born in another era!!!)

    You know, I never thought that something like a finger infection could trigger Lupus symptoms, amazing. If only you could protect yourself from yourself!!!!

    Take care Misty,

    Great to hear from you :)

    Midgex

  • Hi Midge

    That's a good idea to try to see your husband's colleagues Rheumy, recommendation is the best!. Good luck for your abdominal scan results, when do you see the specialist?. I hope nothing worrying is found but enough for you to have help for your symptoms!. This is also where we get torn with this illness!. I so agree with you that hospital appointments can be very stressful!. We never know what we will be told and how!. I make notes and then worry have I covered everything and asked all my questions!. Let's face it we don't get two chances having to wait so long for these sessions!. I do have a steroid reduction plan from my Rheumy , a mg a fortnight till I get to 12 mg then I can do it monthly!. Luckily my GP is very supportive too because it is hard reducing as pericarditis keeps occurring!. It's been the infection that caused the flare, if only we could be saved from ourselves!. A week in Skye will be lovely , never been but I'm guessing it must be very picturesque!. I hope you recover this weekend, fatigue is another tough symptom isn't it?. Have you been tested for anaemia?. It's lovely chatting, would you like to private message on here?. Take Care MistyX

  • Yes ! How does that work :)

  • Thank you Terrier Lady so very much for your reply.

    What a huge battle you have put up with! Dear me you are strong. I shall take a "leaf out of your book" and continue on until I get some resolve. Just sometimes I feel as if I am not being heard at all, I don't express myself well during an appointment (as even to me my symptoms sound endless) and I am not the best at standing up for myself .

    However I feel that I should have a consultation with a Rheumatologist and that is the hard part. Getting the referral .

    I hate to think what may have happened to you if you were not treated!!!

    I hope you are in a good place now .

  • First of all, it is shocking that after having pericarditis a few times the GP is still insisting that taking a few tablets and resting will resolve it, without sending you to have an ultrasound at least to ensure there is no scarring of the heart. Secondly, that the recurrence of pericarditis doesn't ring alarm bells with her.

    I'd go private to a good rheumatologist but even then it is luck of the draw because it depends whether the one you see has a traditional view of what lupus is (I.e. Diagnosis based on blood tests) or is one that understands that lupus can be present despite normal blood tests but in the presence of certain symptoms.

    To me the recurrent pericarditis that you have, plus the rest of the symptoms you've mentioned clearly indicate lupus - I've been diagnosed on similar basis.

    Try and do your research of the rheumatologists in your area before you ask the GP for referral (even private). Use the 'who is near me' functionality of this forum and maybe send private messages to those members local to you and see who they use and their views of their rheumatologist. We are all here to help one another.

    Good luck.

  • Than you so much Purpletop for responding to my post :)

    Yes It was a long journey to get the diagnosis but I did finally see a cardiologist. For the longest of times I was just sent for ECGS and hooked up to the portable heart monitors that you wear for 24/36 hours . Those unfortunately were unsuccessful for me.

    I did have an ultra sound done of my heart and its structure is fine .(thank goodness!)

    I am so grateful for the information you have given me . I really am in the dark about this. I will definitely research Rheumatologists in my area, and try and go into my next appointment more confident!

    Midge :)

  • Hi Midge..Sorry you are dealing with all this...Lupus is the waiting watch game.I am in the USA, and the doctors I have dealt with over the years were very dismissive of my complaints.I suffered horribly for years before getting a DX, and then was sent to many different specialists at the time who were always arguing with each other, or in disagreement over test results and my diagnosis.It can be very discouraging. .Recently I was also diagnosed with psoriatic arthritis. Throughout the 1990's I lived a living hell.I started having actual lupus symptoms in the later 1980's, I didn't get an actual diagnosis until somewhere between 2001-2003..My fogged brain can't quite remember exactly, but anyways, I went through years of suffering and being dismissed.This was all before cell phones and stuff.I bring that up because now I tell everybody this::::**Log/monitor your symptoms. .Most phones have memo's where you can write and keep alittle diary, or even speak and record symptoms , and TAKE PICTURES. .Anykind of rashes, petechiae, swelling of joints, ANYTHING showing up that is not normal..Take this all in to your doctor, because then you have proof.

    Alot of doctors also put way too much emphasis on test results.Did you know in a week you can test negative for the RH factor on Monday.Friday have the same test ran and be positive..Some of the tests only show positive in an active flare.Doctors need to put more emphasis on patient symptoms then just test results..

    Good luck and take care xx

  • Hey Starbright 3x

    I can very much relate to your struggle and the way that you have been treated!!!

    I find it incredible that lab tests can change so quickly, honestly?! I dare say I may be one of those people whose results are border line. Probably that is why they are watching/waiting, but they do not communicate with each other or myself very well at all. Usually months go by without any correspondence at all.

    I will most certainly take your advice to monitor my symptoms with pictures/journal. but to be honest, I am a bit timid presenting them to my doctor for fear of how it will be received. They can be rather condescending and dismissive

    As I am sure you have experienced to.

    Thank you so much.

    Take care, :)

    Midge66

  • It is essential that each of us become a stalwart, tireless self-advocate. No one is better informed about our cases than

    we are. It is difficult, awkward, but possible to learn how. If we don't advocate for ourselves no one will. Best widhes. molly

  • Thank you Molly

    Wise words indeed !

    When it comes to the medical profession I seem to lose my confidence. I find it difficult during a consultation to be heard. Their word is usually final. In my experience I feel that they do not have time for questions either.

    They work so hard and they are most often than not running behind with a waiting room full of patients.

    Sincerely,

    Midge66 :)

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