Hello again everyone, I hope you all had a good Christmas and New Year?
As it's been a while since I posted I'll quickly re-cap - I have multiple auto immune diseases, MS, APS Pernicious Anaemia and a few other things.
I have been diagnosed with Lupus 'Like' syndrome. I feel it's either progressing, or I am in a flare. Yesterday I could barely move, today I feel completely done in - typing this is agony!
Can anybody tell me if Lupus Like Syndrome is sometimes a diagnosis given until more is known about the progression of the disease? Does Lupus 'like' have flare ups?
For this I take 400mg hydroxychloroquine daily - have been told I may need to increase it but for now I'm taking calcium and Vit D. for bone pain before we up the hydroxy. (my vit D. levels are very low)
I'm hoping things will ease up - I use a manual wheelchair but my wrists aren't liking it much anymore…
Any advice?
Oh! I forgot to add - I'm 38 and my Gp wants to test me for early menopause. I have heard Lupus can cause this… in which case, at what point does lupus 'like' potentially become Lupus? I have also been hospitalised recently for severe breathing difficulties and the MRI showed 'glassy ground glass patches' throughout my lungs. They seem to be going now. What causes them?
Sorry if I sound like I am moaning, it's hard to get answers from doctors sometimes, it's hard to remember all the questions too!
Annie x
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anniesensi
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Hi Annie! It must be so frustrating to be told its a lupus like illness when you seem to have all the symptoms of full blown lupus? I know there is complex blood tests of which 5 positives are needed to diagnose lupus. I suffered for years with various symptoms stillbirths, rashes, joint pain, hair loss, APS and protein S deficient and anaemia and STILL lupus was missed for 7 years!! Drs told me its quite rare and very few drs are educated on the symptoms! Like you i take vitamin d, hydroxy although i think 400 mg is max dosage of this you can take. My lungs are affected as lupus has attacked tissues causing fluid and scarring which leaves breathing sore & painful. On top of your MS it must be incredibly draining for you i sympathise with you totally my sister has MS and i know the devastating effects of it. Keep pushing for answers Annie it def sounds like the lupus has progressed. I hope you start feeling a little better soon. This is a great place for support when feeling alone in this lupie world!
I do get the impression that my diagnosis of Lupus 'like' is because I am a very auto immune person and I feel that my (very good Dr's) probably don't want me to worry as it's early days - in so far it was only about two years ago I was I was diagnosed with APS following a major blood clot in the artery of my right leg. I had surgery to remove the clot but it was very complicated and I almost lost my leg at the hip! Thankfully it was saved. (THANK YOU KINGS)!
Within 6 months of that I had massive PE'S both lungs and into the arteries, and at that time it was noticed that the "massive MS relapse" I suffered in 2010 was actually a stroke! (I won't name the hospital that made that mistake)
At that time I was also diagnosed with Pernicious anaemia and more recently Vit. D deficiency. I'm taking calcium for that as I was complaining of wrist and hip pain, with a view to increasing the Hydroxy further if calcium tablets didn't help sufficiently…. That would be going over the 400mg which worries me.
MS was diagnosed 10 years ago now, in light of everything else the hospital thought it a good idea to confirm my diagnosis of MS, which it has been, and that was when the old stroke was picked up! Three years later! (explains a few things).
At my last CT scan I was told that the ground glass patches in my lungs have cleared up, but that I have a few nodules in my lungs. They don't seem overly worried about that but I am having regular CT scans to check.
Does that fit in with Lupus do you think? I don't know at what point you are considered to have all the symptoms but not the disease. Of course I am hoping and praying that I do not have SLE, as far as I am aware my bloods have only confirmed APS. I don't really understand what more they need to see in blood work. Or if blood tests are always reliable ? Could it be that they only come back positive whilst in a flare?
I have a family history of auto immune disorders. My Uncle on my mothers side lost his toe age 20, then his lower leg, then his whole leg. I thought he died from a heart attack - I recently found out he had organ failure. It was assumed that all his problems were from smoking however I think in retrospect it is unlikely.
Sorry for blathering on so much, Well done for getting to the end of my rant. It's good to know that there are people here to talk to because I do feel very isolated at times.
Sophie, I'm sorry to have spoken all about myself, I am so, so very sorry that you suffered what must be the worst that this disease can throw at you. I am very lucky that I had my daughters before I was poorly, My eldest is now 18. I realise how incredibly lucky I am not to have had problems having children. It breaks my heart to hear how many people have suffered miscarriages and still births. xxx
Dear Annie, You really have been through the mill haven't you, you sound so strong dealing with all that your illnesses throw at you. I'm not the most experienced (diagnosed SLE 3yrs ago) but ill for around 4-5yrs before that, but what I do know is that SLE can take quite some time to diagnose, partly because it's so difficult to diagnose and also because blood tests do not always show lupus, many people on here go through numerous tests before being diagnosed eventually.
What I tend to think is if it looks like lupus, acts like lupus then chances are it probably is lupus. Also as one who is prone to auto immune illnesses it wouldn't come as a huge surprise if you did have lupus. I sincerely hope for you it isn't as you clearly have enough to contend with, but on the positive side - if it is - at least you can receive the correct treatment tailored for your needs.
All the best Annie, I hope things pick up for you soon.
I can deal with anything IF I know what it is. I sincerely hope not too. Auto immunity seems to be in my family - Dad has pemhigus and my brother was dx with type 1 diabetes at age 40. He's slim and fit as they come other than that.
What upsets me is that at present the only thing the Dr's are trying to get me to do is to see a Psychiatrist. I don't get it.
Hi..don't give up. I was told all 13 of my conditions were because I didn't want to go to work!! I was then told by neurologist I had wasted too much nhs money being a very highly skilled paediatric nurse and now didn't want to use my skills and wanted to waste money receiving care myself and had read too many medical text books to find rare diseases!!!!!!!!! The rheumo then said I was fit and healthy and had ME ...he filed ABNORMAL results as normal and discharged me saying I was worried well!!!
I was NONE of the above and have 13 very complex conditions am tube fed and very ill! Drs sadly she not afraid to distress some people. I now have excellent care and they all know how genuinely sick I am...don't give up..ever!!! Seek help daily until someone listens
That is awful - I can hardly believe it -although of course I do. Why on earth would anybody get themselves a good career and then decide, "I think I'll pretend to have 13 serious health conditions" ??? It just doesn't happen. I'm so sorry.
Maybe Dr's think they can say what they like to Nurses? I don't know.
I'm seeing a Psychiatrist next week because well, I don't know why. I think tears in a Neurologist office = mad woman. (to some). I have a movement disorder called Acute generalised Dystonia. I was given anti-epileptics for that which didn't agree with me, but helped the condition somewhat, but because the Dr's have drawn a blank it's off to the psychiatrist for me!
I will go, I will ask him how can he help me? It's likely to be traumatic but I'm taking my partner with me and he will stick up for me if needs be.
I could never speak ill of the NHS and those who work within it - but some Dr's are just awful. I'm glad you are getting good care now.
I really feel for you, this is so terrible! It's made me angry to read what you've been through, only to be treated in such a way. I suppose a psychiatrist could refer you to a CBT therapist to help you develop coping strategies for when medics treat you like a loon, otherwise I fear it will be a wasted trip.
I'm nowhere near as poorly as you, but sadly because of a diagnosed mental health illness (bipolar), and 2 sets of negative bloods, my lupus like illness is being dismissed by everyone as psychological. Very frustrating. I've had to give up my job as a lawyer 6 months ago because of joint pain and fatigue, have Raynauds (diagnosed), skin rashes, Fybromyalgia, hair loss, episodes of kidney failure, aseptic meningitis, eye dryness and lattice degeneration, raised lymph nodes on my neck and behind my ears...the list goes on. Not the severest case, granted, but also pretty difficult symptoms to invent. So, like you I wonder how Lupus gets diagnosed? If bloods stay negative, will I really just be dismissed as a crackpot for ever until my kidneys pack up for good? I bore myself with it, but it's devastating when people look at you like your a nutter because let's face it, who could possibly have all of those things wrong with them without an actual cause...x
I was in hospital with critical PE's. They'd been in both lungs and in the arteries leading to my heart, I was more poorly than I knew at the time. When I was discharged and the Nurse was reading out my medications for discharge I was shocked to find that I had been put onto 40mg Citalopram - an antidepressant. I hadn't been told - when I asked what did they think they were doing the nurse sort of shrugged and said, "well I suppose the Dr thought you were a bit down" !!! Imagine if I hadn't been paying attention?
I was referred for CBT a while ago, it was great, it was given to me by the hospice and the Psychotherapist was amazing. It's a new psychotherapist that has sent me to a psychiatrist. One that I was referred to for being tearful at appointments.
I'll go along with their wishes, prove myself sane ( as if I should have to) - and hopefully this will be enough for them to take me seriously. I'm getting on with things, I'll tell the psychiatrist about my hobbies, my plans, my kids, my life and ask him if he really thinks I am in need of a psychiatrist to solve my health problems. (a rhetorical question)
It's awful for you that because you have bi-polar that you aren't taken seriously for other health issues. I just don't get why. I think it's an easy cop out to blame your mental health when actually it's because the Dr's can't do a lot. I feel for you.
And as for whether you have the most severe case or not is irrelevant - your pain is your own and it's no less relevant than somebody else's. I feel as if I am lucky compared to many people, but we can't ignore our own individual pain and we shouldn't feel weak, or bad for being upset about what we are going through because pain and fear is pain and fear and it's real.
Thank you for your kind words, I feel guilty when I moan. As for the tearful appointments...have they never heard of tears of frustration? I cried like a baby when they told me the bloods were negative again yesterday. Of course I don't want to be ill, but as a rational, logical and intelligent human being, I can't except that these things just keep happening to me with no explanation. I wish you luck with the psychiatrist, in my experience, they are very good, and do not prescribe medication as readily as a normal GP or general hospital Dr. They see mentally ill people, not people who are fed up and frustrated because they are having a shocking time and feel terrible. Hopefully it will be a painless experience and they will readily agree they don't need to see you. All the best x
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I have heard Lupus can cause this… in which case, at what point does lupus 'like' potentially become Lupus? I have also been hospitalised recently for severe breathing difficulties and the MRI showed 'glassy ground glass patches' throughout my lungs. They seem to be going now. What causes them?
Blood clots and urticarial vasculitis syndrome
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