lupus "like" syndrome - and many other auto immune diseases. New symptoms what is this?

[anniesensi]

Hi I have posted a few blogs, and so if I am repeating myself too much I'll just blame it on the stroke!

Okay, I'm trying to piece together my history, and wondering what may be relevant. I'm also getting new symptoms and would like to know what is meant my the term lupus like syndrome!

Nine years ago I was diagnosed with Multiple Sclerosis - this has been confirmed as fact by Prof. Hunt. (I know Lupus / APS can mimic MS). Some time previous to my diagnosis of MS I had severe pleurisy. Is pleurisy assosciated with SLE?

Basically, is the term lupus like syndrome used when the diagnosis is new and it's a "wait and see" when blood tests are inconclusive?

As a child I suffered chronic back pain which has stayed with me to this day. Age 7 I couldn't walk around the shops with my mum without needing to sit down.... I have had classic migraines from about age 11.

So then I had a major stroke aged 34, which went un-noticed by A&E as it was assumed to have been an MS relapse. (upsetting) So my APS had surfaced, and since that day I have been in a wheelchair for the majority of the time, and need carers. I am 37 years old. Several arterial clots and massive PE's and a TIA later I'm still going!

My question really, is what is lupus like syndrome? Does a history of pleurisy and long standing low back pain from walking indicate anything at all? I have also been diagnosed with Pernicious Anaemia and I am folate deficient despite being vegetarian. Clearly, I am an auto immune person.

Is it possible to have SLE And discoid lupus (plus everything else)? I ask, because I wonder IF I have SLE. And I wonder if I could have discoid lupus in addition - or if skin rashes as I describe mine are common in SLE. I am developing a rash which increases in number and size each day. It starts like a red sore, then sort of dries up and it itches sometimes. They are no more than little dry patches of raised red skin, but each day I wake up with a few more.

Do you think that being told lupus "like" syndrome might be something that's said to reassure when the diagnosis isn't certain, or is is a benign type of lupus? I am taking 400 mg of hydroxychloroquine for this.

Despite my medical team being amazing and having my complete trust I can't seem to get them to give me a straight answer on that one, so I'm just hoping that somebody might be able to give me their own thoughts.

Thank you for reading this long post, I am sure it doesn't make much sense... I tried!

If anybody has some pearls of wisdom they would like to share and discuss, please, please do because I really need to understand my body again.

Thank you,

Annie xxx

[Melinda]

I can't tell you about pleurisy although i'm sure others on here can. I have SCLE which is a type of lupus of the skin, there are others. I was told when lupus affects the skin, it is quite benign.

Lupus is hard to diagnose but it can cause blood clots and strokes. You have certainly been through a lot and i wish you well. Take care.x

[anniesensi in reply to Melinda]

May I ask, how does lupus affect your skin?

I got a small itchy blotch on my back about three weeks ago, it seemed like nothing but the next day it was larger and with another small one next to it. I thought nothing of it but the next day they were larger and there were more.

Now the blotches are increasing in number around my back and tummy, beginning to creep onto my chest. They feel dry and slightly raised, and red. Does it sound like it's something that could be lupus? All I know is I have this lupus "like" syndrome with APS. I haven't been told anything about what I might expect with lupus "like" syndrome.

hope you don't mind me asking?

Annie.

[brave]

annie......firstly you sound so brave.My a.n.a was the pointer for me as my symptoms are classic lupus and my consultant treats on a symptom basis rather than lab work ,there is a minority who never present with text book lab work .I started with symptoms in late teens but evidently from age 21yrs im now 38yrs,for me its been a slow progressive pattern with regular flares and the last one lasting 12months and still going.I have a lot of neurological involvment which has proven tricky on testing as they come back normal ,i had an mri which showed a small chronic infarct however neurologist dismissed this .I have questioned m.s?my mum sufferd m.s but i do think she actually had lupus ,but im not the expert .i think all autoimmune disorders are similar in many ways and most treated with the same approach ,i wish you well ,brave

[anniesensi in reply to brave]

Hi Brave, what is ana? I think you are fortunate to have a consultant who treats not only on lab results.

I'm 37, so we probably have a lot in common re our day to day lives... I know a lot about MS as it's my primary condition and I have had it for 9 years now. If there is anything at all I can help you with there, do ask.

The approach for dealing with MS seems a little different that any of my other auto immune issues, so it really is worth knowing Then you are able to make decisions about management. I think you are right though, in that if you have one you are likely to have another...

All the best,

Annie x

[jacqueline121]

Hi Annie, so sorry you have had to go through so much. Pleuresy can be caused by Lupus as i had it in the early days. I also suffered fron chronic back pain like you described and it got worse when i waa shopping and i always felt i had to lie down. It is possible to have SLE on top of everything else. Doctors are dubious about diagnosing it unless they know for sure and blood work can take years to show. From what i have read APS also has very similar symptoms to Lupus also. I take steroids and immune suppressant drugs but could not tolerate the Plaquinel. It took me 10 years to finally get a diagnosis. I also get swollen painful joints and fingers, rashes, sun sensitive, hair falling out, memory problems and a bunch of other symptoms. I hope you find the answers. All the best for the future. God bless x

[Nightjar]

Hi Annie, Yes, pleurisy is on the list of lupus symptoms. The first time I had pleurisy was about 20 years before I was diagnosed with SLE (through a blood test). Memory problems is also on the list, so don't worry about repeating yourself. We all do it.

Despite a good diet, if the digestive system isn't working properly, the body may not be able to absorb the nutrients, resulting in deficiencies. Ask your GP for a referral to a dermatologist - don't forget to take photos (over time), as may be useful to show changes/development of the rashes.

It seems (in the last year or two), that unless there is major organ involvement, many patients now won't get a clear cut diagnosis of lupus. It is good, of course, not to have major organ involvement, but being kept 'in a grey area' for years is not helpful. It makes it very difficult for people, living with a chronic disease, who naturally need to know what they are fighting. Whatever the condition is called, the medication seems to be the same - another reason doctors may not be in a hurry to put a name on the condition.

I hope you get some answers soon - thinking of you. xxx

[anniesensi in reply to Nightjar]

Hello everyone, I'm sorry, I don't know how to send this to you all, I hope that by replying to the last post you will get a notification?

I said I would let you know about my interview at the hospice - I am so happy because they have given me the position!

Your answers to my question were so helpful, I really do appreciate the time you all took to write. It seems that sometimes Dr's are afraid to give a prognosis, which I do understand, but also to tell it like it is. I prefer a Dr to talk to me frankly, so thank you for filling in a few gaps for me.

The rash on my skin is increasing every day - joints feel very sore. I was only diagnosed this summer... and by accident because I had PE's and a clot in the main artery of my leg which gave me the APS diagnosis. All so sudden...

But, I'm feeling very positive at the moment, despite everything, and for the first time in a long time I feel... I think it's called happy!

I hope you are all well,

Annie.

[Nightjar in reply to anniesensi]

Well done Annie! I am so very happy for you. It sounds like things are going to work out OK after all. Congratulations! xxx

[brave in reply to anniesensi]

Hi....a.n.a is antinuclear antibody test.i have a positive speckled pattern ,in terms of your m.s ,yes i realise there treated slightly different ,my mum was just on the usual ,gabapentin,amyltriptaline,oxycontin,baclofen ,ompromazole,and more ,it was painfull to watch her suffer ,she never had remission ,just progressive decline ,but i feel she held so many emotions in it totaly exacerbated her condition?plus she never tried to follow any kind of diet or lifestyle choices,just chucked an array of pills down her throat,unfortantley she passed age 56yrs from cancer ;(i started with neurological symptoms but docs dismissed always ,still to this day i suffer terrible neuro symptoms but mri and nerve tests were normal ,apart from a chronic infarct on brain which they still say i would have been born with ,but given my symptoms and the infarct i reckon it was later in life ,who knows ,well im labelled with lupus and neurological involvment ,i do feel the neuro symptoms are getting worse but docs dont seem botherd at all???do you have both lupus and m.s?how did you get diagnosed with m.s?

[anniesensi in reply to brave]

Hi Brave,

Good name, by the way.

I have a multitude of auto immune diseases, MS being the first, though I had very bad pleurisy before I was ever given any diagnosis. That was just one of those things that in hindsight could be of relevance. I have APS, MS, Lupus, Pernicious anaemia and a movement disorder that doesn't seem to fit into any definite bracket yet. So I'm off to a movement disorder clinic next week. I get acute attacks of generalised dystonia. I too have been prescribed gabapentin amongst other things for that. I take about 50 pills a day - really - but gabapentin is the worst. it makes me very emotionally unbalanced at times.

I was diagnosed with MS firstly with MRI scans of the brain and spinal cord - both showed lesions, and then a lumbar puncture which tested positive for waste products of myelin. I have been told that this combined with my symptoms was a clear diagnosis.

Hearing of how you watched your mum suffer is terrible. I know my daughters worry. I know I feel the pain etc... but their pain is as bad, or worse I think.

If you would like to pm me with your neurological symptoms I can tell you if they are things that I experience, or things that I have heard of MS sufferers experiencing. But if you are concerned, ask for a lumbar puncture. They are not as bad as everybody says, and perhaps it would answer some questions for you?

Can you be born with a chronic infarct on the brain? As I understand it, an infarct is a stroke. My stroke is described as an infarct on my discharge letters...

All the best,

Annie.

[anniesensi]

Thank you everybody, it;s so wonderful to be able to come here and ask questions and share experiences with people who truly do understand.

I have had a bad day today... I was referred to a Dr at another hospital... I was referred by my neurologist - but this Dr appeared to be another Neurologist! So, I had to explain my whole history again, and then he asked me what did I want, what did I hope for? I said I wanted to be able to walk outside again and to get rid of all my drugs and go back to University.

He said point blank that he did not believe it possible I will ever walk around outside again. That was ok - I expected that. I was being ironic really. But there's always hope?

Then, I was told the Physio was going to see me. I wheeled into another room, and there were three faces like stepford wives smiling at me... One was another Dr, One was a physio, and one was... who knows? They suggested I EXERCISE more! Apparently it will increase my energy! Every day I haul myself up and down my stairs instead of using the stairlift, and every day I take a shower, and sometimes even make the bed! I can promise you, it doesn't increase my energy levels! Maybe I should think about trampolining? Or cycling? I heard jogging is good?

I was also told that I seemed very distressed, that perhaps I should see a Psychiatrist.

Well - Frankly, who wouldn't be? I think a Psychiatrist would be needed if I wasn't grieving my health, the things my girls miss out on, the failed marriage and the financial strain of having my ESA taken away!

I hope tomorrow will be better, I have an interview at our local Hospice as a volunteer Creative Therapist in their day centre. I'll let you know how it goes

Annie x

[Melinda in reply to anniesensi]

Hi annisensi. My lupus rash at its worst, were disc shaped lesions that covered most of my body, except my face. I believe discoid lupus does affect the face. There are also other lupus rashes so i discovered. At the moment all i have of my rash, are a few small red spots.

[anniesensi in reply to Melinda]

Hi Melinda,

mmm. yes, that sounds like me. the blotches started on my ribs, then around onto my back, then tummy and chest. Do the red blotches come up because of a flare, or is is par for the course that they will just be there? I think I need to find out more about Lupus, but with a diagnosis of lupus "like" syndrome I really haven't been told anything of how my particular 'brand' of lupus is likely to affect me.

I see a Haematologist for the APS and Pernicious Anaemia and a Neurologist for MS. I'm being referred to a pain clinic. Ought I see a Rheumatologist as well? I must say, my Haematologist is amazing, Professor Hunt at Tommy's. I have absolute faith in her, and all at Tommy's.

I was back in hospital over the weekend with my second TIA in as many months...

Oh to be normal! (whatever that is)

Take care Melinda x

[brave in reply to anniesensi]

Whats a TIA please?

[anniesensi in reply to brave]

Hi Brave, a TIA is a Transient Ischaemic attack, or a 'mini' stroke. I think it's connected to the APS rather than the Lupus though.

[brave in reply to anniesensi]

Hi,anniesensi,i have lots of M.s symptoms always have had ,but also lupus symptoms,and as my evoked potential and muscle testing was normal ,they totaly dissmissed my mri finding and said i was born with infarct?and they consider m.s testings normal??who knows?i could ask for a spinal tap ,but as my spine is uper sore to touch i cant imagine a needle going in there.I think since i was told i also have fibromyalgia they keep putting everything down to that.im confused and scared;(

[anniesensi in reply to brave]

My experience is that the most obvious cause for things is not always the most likely. With these auto immune diseases symptoms blur into one and other, as Melinda said, auto immune diseases overlap.

The LP really isn't so bad, and if you need to know, as I do, then it is worth it. You are given a local anaesthetic. I won't pretend that it doesn't hurt a bit, but don't listen to horror stories, honestly.

I think you sound like you need answers.

Suppose you have MS, it's not life threatening. It's horrible, but bearable. I am more afraid of APS than anything else... MS is one of those diseases that grumbles away and every now and then kicks you in the teeth just so that you haven't forgotten about it.

Again, suppose you have MS - and this is a just suppose - you would have already had it for some time, and so you'd already be well experienced in how it makes you feel - although differentiating between one auto immune disease and another is tricky. I felt I 'knew myself' with MS and everything else has blurred the boundaries. I suppose it could be the same for you but in reverse; however worrying won't help you. I think you need to find answers...

When I was tested for MS it was very clear. I didn't have evoked potential tests, just an examination, MRI, and LP. It is worth knowing that MS sometimes only presents lesions in the spinal cord, sometimes only brain and sometimes both. I have heard of people being given the MS all clear when they have not had the spinal cord scanned. At the time of my diagnosis I had only one brain lesion, and three in the spinal cord.

Please don't let Dr speak confuse you - they often forget, but the Dr's work for you. Demand their time and understanding, and remind yourself that you live in your body, they read about bodies in textbooks. Not to say they don't know what they are doing, but I think that sometimes too much is assumed.

You will be okay. Nobody can fight something unless they know what it is. Please don't be afraid, MS is painful and disruptive, but it does not shorten your life. And I think you are probably experienced in painful and disruptive!

Listen you your instincts and be guided only by that. Tell your Dr what you want, and stick to that. Demand a referral or a second opinion if that's what you need.

Of course you are confused. It's natural when your body messes up and people don't understand.

keep in touch, I hope I haven't bombarded you.

xxx

[brave in reply to anniesensi]

Not bombarded!thankyou for your time

[anniesensi in reply to brave]

Of course, any time Brave, you can e-mail me, or p/m me if you want to talk about this.

x

[Melinda]

anniesensi, i see a rheumatologist for my arthritis, and a dermatologist for SCLE.

Lupus is different for everyone who has it. Many of us have other overlapping autoimmune diseases. I also have mild RA. Lupus is a multifaceted disease and may require treatment from different types of consultants.

So sorry your having such a tough time of it. Take care.x

[Elle-26]

If you suspect Discoid lesions then go see the doctor when they flare up, keep going back until you can get a biopsy done and sent to see a Dermatologist .... Ive Discoid Lupus, Fibromyalgia, Sojourn's, Symptoms and signs of SLE Arthritis and physical signs of Myasthenia Gravis and Raynaud's , Ive lost my hair, eyebrows and eyelashes now ... my spine MRI showed systemic problems ... yet my bloods are normal apart from my Anemia .. Rheumatologist is baffled .... its a Lumbar Puncture next and then sent to the Lupus Clinic in London as they dont do complex cases down here in Cornwall :/ None of the meds are working and its been a rapid process as its become aggressive ... All this has taken less than a year to hit me ... This time last year I was a normal healthy fit person working ... now Im a wreck