This is as much of a rant as a question. My sister is getting sicker & being pushed form pillar to post by various doctors. It is so difficult to watch someone you love go through the trauma of illness, & the stresses of attempting to get a diagnosis, especially when you have been through it yourself & know how it all feels.
But my sister is having a much worse time than me, & her symptoms are developing more rapidly. She has now, on seperate occasions, been diagnosed & then undiagnosed with MCTD & then hodgkins lymphoma. Can you imagine how it feels to be told you have cancer, & then 5 weeks later to be told "oh we got it wrong, so go away & get on with your life." When in fact you are feeling terribly ill.
The latest rheumy has recently given her a provisional diagnosis of Syogrens Syndrome & has prescribed plaquenil. Which seems to be a small step in the right direction. But we both feel there is more to it than this. I would really like her to get a second opinion from a lupus specialist, especially considering my medical history (see my profile) & that we also have a cousin with primary APS. She is like me though, she doesn't like to cause a fuss, & is really too ill at present to push forward.
Please give us your thoughts, as much for support as for any practical help you can suggest. My sister is on this site & she will read it too. I want her to know how much I love her, & how much I want to help in any way I can.
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roobarb
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Hi you are in the right direction. APS Hughes Syndrome, often goes with a trio of disease, including Sjogrens and also Thyroid problems, also others in the family will often have APS or silmilar or APS and Lupus. This describes my family, also be aware there is Sero negative Hughes Syndrome! Mary F x
Hi there, you need to see somebody who understands the disease, at Hughes Syndrome Foundation, we have a list of medical staff who understand the disease, on the NHS and privately, area by area, although some who have a terrible time with sero negative Hughes prefer to take their NHS blood test results and go to London Bridge. Hughes Syndrome Foundation has a forum on here, but please also still stay on this one, many of our members have Lupus such as mine, and are on here and vice versa.... a good system of swapping information more widely: hughes-syndrome.org/self-he...
All the best to you. ps I have Lupus and Sjogrens, Thyroid... (member of Thyroid UK for that bit), also Hughes and one more. Mary F
My sister suffers with dry eyes and thyroid issues. At the time of my diagnosis my rheumatologist, after asking whether anyone else in the family has similar symptoms and my explaining that she has dry eyes, etc, strongly suggested that she gets checked for Sjogrens. She doesn't live in the UK, though, but she did mentioned to her rheumatologist my lupus and she did the tests locally - as it happens, they came up negative for SS but she is going to repeat the testing soon.
I was impressed with my rheumatologist - until his question it didn't occur to me that there is a connection.
So I think that getting in front of the right consultant is critical. I understand the "not make a fuss" point but getting a second opinion wouldn't be viewed as that. Most doctors are used to get 'checked' this way and if they are good ones, they don't mind. The issue will be in finding the right consultant - sadly, private consultations seem to be more fruitfull than NHS ones, not only because of the time you are given to go through everything but also because the consultant feels duty-bound to do something about it, as opposed to hiding under the NHS cloak and forget about you the minute you leave the room.
Good luck to both of you, it is awful what your sister has been through!
Thanks purpletop, it is good that your sister is a aware of this issue for the future. It is so true about getting in front of the right consultant. I think most rheumys only know the "text book version" of lupus, but not the reality that we have to live with.We are lucky that there are 2 lupus specialists within traveling distance of us, ie Prof Bruce at MRI, & Jasmine Ahmed at the N Wales rheumatolgoy centre of excellence. I am hoping my sister can get a referral to one of these for a second opinion.
My mother has Lupus and her two sister both have type 1 diabetes so family history can play a part. That said my brother seems ok so it is not a given.
hello, my twin had lupus, I have it, my younger sis has lupus and her twin our bruv (my mum had 2 sets of twins) has M.E. my mum has always been poorly after a stroke at 32 yo.
sadly it took some time for my sis and me to get diagnosed, although not as long as some people on here so I shouldn't moan. I do understand how you feel as I see my sis struggling with lupus and my bruv with M.E. especially as its the fatigue that makes living a normal life extremely difficult. (not to mention everything else).
my sis sees a bone specialist (as it was painful joints she was referred to him with until he saw the faint purple rash and took bloods for lupus) hes great and listens and cares where as I have a lupus consultant and shes as useful as a chocolate tea pot and friendly as a starving hyena!
please encourage your sis too fight them and get an answer as she shouldnt have to battle on without a proper diagnosis. lupus is a nitemare but at least we know what we are up against. spoons to both of you x
Thank you canine crazy. It must be so hard to watch your family suffer, but I am sure you support each other all the better for knowing how the others feel. Your comments about your specialist made me laugh! But I do hope you are getting the treatment you need from your chocolate teapot.
After receiving my diagnosis last year, we traced it back, that I possibly started having symptoms 10 years ago. I have lupus sjgrens raynaulds rheumatoid arthritis and hyper mobility syndrome. Lots of research on my part has shown that lots of diseases overlap. My sister has ms and my mum rheumatoid arthritis both can be associated with autoimmune diseases as well as hyper mobility. I'm now in the process of being checked for celiac.
My daughter has for years shown lots of the same symptoms, when I got diagnosed I said she had To go and get checked,her answer was come with me mum as they don't believe how ill l feel and make me think I'm a hypercondriac.
An appointment was made,because she has depression on her records they without any tests immediately said your depressed! After a heated conversation the gp shrugged her shoulders andsaidwhat do you want me to do about it? I said refer her to the rheumatology dept, (my consultant) the gp reluctantly agreed. My daughter had her 1st appointment in May this year, they sofar have diagnosed she has hyper mobility since then has had many blood tests as they keep showing an abnormally result she started having physio and continuos appointments. She tells me she's never felt so much care before from the nhs and at least they haven't given up, they are still checking on a regular basis, is it possibly because we are seeing the same consultant and he has the family history?
My conclusion...it does run in families! Don't give up you will find the right diagnosis eventually, unfortunately it does take time. (Which is pants when you feel so ill) good luck and best wishes to both of you xx
Thank you Chris, & thank goodness you pushed for your daughters referral. I hope she will get the best care possible now that they are aware of your family history.
Yes they can I have it my two daughters Andy cousin and I think my brother has it but he won't get tested
My sister has sjogren's and fibro myalgia. I had a great aunt (grandmother's sister on my mother's side) with rheumatoid severe enough to put her in a wheelchair at 50 (though of course the drugs weren't what they are now, in those days).
We also had a great aunt with severe RA, Maggie. I remember her knees were the size of footballs, poor lady. The auto-immune link seems to have skipped a generation with us.
Yep my mum and two aunties have rheumatoid arthritis, one of my aunties has fibro and my grandma on my mums side had raynauds, so i was buggered from both directions haha x
Grandma on my dads side, aunties are on my mums side lol luppy brain isn't functioning. Also the aunty with fibro and arthritis has all the same symptoms as me but wont go see a rheumy, iv suspected for ages that she has sle as well but the idea terrifies her so she wont listen to me, just keeps saying she has a food allergy. X
I have Lupus with an overlap of RA. My late sister had Lupus and I have an uncle with Lupus. My mother had RA. I should say my mother and uncle came form a large family, and they were the only ones to have had autoimmune diseases.
Hi I have lupus just recently diagnosed, now my 14 yr old daughter is now starting to have similar problems and we have been told she might have hypermobillity, my sister has fibromyalgia, so I understand how you feel, good luck for the future x
I come from a family of ten children, 2 boys, 8 girls. My older brother was diagnosed with MS when he was in his early thirties, he is almost 63 now and doing OK. Has had his ups and downs and I am sure does not share all of his health problems with us, but is still walking around. My granddaughter was diagnosed with Type 1 Diabetes when she was 5, she is 14 now and doing well, lots of visits to ermerg over the years but all good learning experiences. I was diagnosed 2 1/2 years ago but have had issues over the years that none my of my sisters seemed to have and always felt like a little odd about that. When I had my first big flare I was going to the doctor and Emerg if doctor wasn't available. My face was a wreck and I felt pretty sick. Finally a doc in Emerg (2nd time he had seen me there) decided there might be an issue. One of his questions was if I knew what an auto-immune disease was, I told him about my brother and granddaughter and he sent me for a ton of blood work, one of which was ANA.
Dont let the medical profession stop you pressing for answers.
In 1987 after watching me get more and more ill and nothing being done apart from blood tests my mother rang my GP she said "I cannot stand by and watch my daughter die even an animal fights for its young" Two hours later I was admitted to hospital and given blood transfusions. Still no diagnosis till 1997.
Keep on tell them you need their help not just dismissing. Please get sorted soon.
Dear rubysue. It must be hardest thing for mum's to watch their children suffer. I looked at your profile & you seem to have a lot of similar issues to me. Do you mind me asking how old were you when you had MI?
There are alot of auto immune conditions in my family so i think its all linked. when i was diagnosed it was made to feel like i was bound to have lupus as the consultant kept referring to all the conditions my family have. Both parents and brother have diabetes type 2. A long history of diabetes throughout the family type 1 and 2. My mum also has RA, fibro, osteoarthritis, psoriaic arthritis and thyroid issues. My aunt has RA and epilepsy and an uncle with Crohns. And that is just family that live here!! The rest of my dads family in ireland have countless auto immune problems too!
I said to my consultant that it is just the cards u are dealt in life it is not my biology to blame. And to be truthful i am constantly ill, but i am blessed with a wonderful family and wouldnt be without any of them - worts and all!! lol
I'm glad she has at least now seen a rheumatologist that is doing something (prescribing is a step forward at least, although hope it actually helps).
I think a referral onto either of those specialists sounds like a good idea. I've heard good things about the MRI team. I keep wondering if I should be pushing to be seen by them.
I can only imagine how horrible it is to be told it is lymphoma and then not. My GP was very concerned that was what is making me ill and I was referred to rule it out and I found that distressing enough. I tried not to worry that it might be, but it's pretty difficult when you know there's a chance. Thankfully for me ENT didn't think it was the first time I saw them, but the only way you can know for sure is a biopsy and they decided to watch and wait for a month. With persisting swollen nodes and my review next week, I'm wondering whether or not they will biopsy this time. I wish they'd just get on with taking one out and testing it then at least I will know for sure! If they don't and say they're fine then my glands stay swollen I'll always have this nagging worry that they might not be.
That is a little scary. How did they find out it was wrong? Did they initially do a FNA before taking one out to check for sure? Apparently that's the reason they decided to wait for me. Didn't want to do an FNA because it could give a false result, but they don't want to do an excisional unless they really have to.
Hi Lesley, Ive been meaning to reply to u for ages, i did write one but before i cud submit it my fone went dead and it was lost. so im writting this on the pc on one of the few occasions wen my teenage daughters not hogging it! Im roobarbs sister and was missdiagnosed this summer with hodgkins lymphoma. I had a swollon node under my arm, gp sent me to breast clinic, l had mamogram (was clear) & hollow needle biopsy which came back positive for H.L. They removed the node, sent it off to be tested, did C.T & PET scan. five weeks later they said theyd made a mistake, PET scan showed I did not have any kind of lynphoma. mean while Ive been getting worst with fatigue & joint pain & also have auto immune under active thyroid & the symptoms of Sjogrens. Ive noticed a swollen node in my neck in past few weeks which is hard like the one under my arm, but i think its related to my other problems & have come to the conclusion l have Lupus (but do not have an official diagnosis) or some other similar autoimmune problem. my rhumy has put me on Placquinil (dont think Ive spelt that right) so at least thats a step in the right direction. I really hope this info helps u in some way & l hope u get some answers & correct treatment soon, its so frustrating when u know theres somthing wrong but u dont no what. Take care.x
Five weeks! That's terrible. Glad that it isn't lymphoma, but frustrating that you do not have a diagnosis yet. At least your rheumy has started you on something and hopefully it will help. I too think lupus fits best, but who knows. The rheumatologist and my GP have both said they didn't think my symptoms "fitted a typical pattern of lupus", which I thought was strange seeing as from my reading I'm fairly sure there *isn't* a typical pattern of lupus and I certainly have enough signs to suggest it might be.
Hi - I have been diagnosed with SLE, SS, RD, asthma and osteoarthritis. My gp told me that SS, SLE, RD, asthma and even hay fever tend to go hand in hand, so according to her there are links.
My mothers immune system collapsed in her mid 80s and she was admitted to hospital. Before they could do any tests or treat anything they had to kick start her immune system as it was so low, she was in for 6 weeks and they eventually diagnosed myasthenia gravis which is a neurological disease. One of her sisters had the illness too. Mum also had an over active thyroid in her 30s as did I, and my daughter was treated for it a couple of years ago, she'll be 40 next year. I believe these things run in families, in the genes....we inherit these weaknesses is my thinking...
My gp was slow to get a diagnosis and for long time I thought I had cancer..an aunt died from breast cancer when I was about 19, my father from lung cancer in his late 60s and my sister had a masectomy some years ago, she's now recovered and still working at 65....Once I got a hospital app for tests the results came back quickly for SLE...I was given plaquenil Roobarb and its helped...Do hope your sister gets a proper diagnosis and the treatment she needs xxx
this was interesting, My mum has had R A for years, and Diabetes, then 8yrs ago, I was diagnosed with Lupus S.L.E, and just last month i too develped symptoms of R A which is now confirmed..was interesting coz i didnt realise cud b genetic, i do remember askin if cud b hereditary, and i was told no, ..now i know genetic is different matter entirely..rather worrying, id hate for my kids to have this.
This is an old post I realize and this may not be relevant, I'm just not sure. My brother was diagnosed years ago with full body psoriasis and terrible psoriatic arthritis. For years and years I had trouble with sciatica and different types of constant pain I was diagnosed with fibromyalgia you name it. Then when my neck started using and hurting extremely bad I was told by my neurologist that women carry stress I'm their shoulders and that why they call men a pain in the neck! Since I'd just gone through a terrible divorce he thought that was it. Then, after an mri I had a dx of "your neck is all jacked up". 28 years later I finally found my diagnosis on the internet by relentlessly searching and finally got the right group of words to lead me to ankylosing spondylitis. Then I had to wait 2 years to see a rheumatologist that saw patients with Medicare. I told him what I suspected, but when he saw psoriasis on my elbow, he said I was wrong, he was pretty sure it was psoriatic arthritis. After some blood testing and simple xray, my dx was confirmed. I have Ankylosing Spondylitis, Psoriatic Arthritis, Sjogren's syndrome and "probable" lupus. My brother, who suddenly died 3 years ago had Psoriatic Arthritis and Ankylosing Spondylitis. He was so bad that he had been on biologics for decades and had his feet be found when he was 33 because his toe bones and part of the ball of his foot had deteriorated so bad they were just floating in the skin. It's so odd because my mother had two children and we both have these diseases. My mother also took...dang the name escapes me, but the morning sickness drug in the 60s that had babies being born without limbs, etc...I have a kidney and a fallopian tube affected from her taking that medicine my fallopian tube is just a little nub and my kidney is twisted about the y-axis a little bit.
hi my daughter has been checked for lupus .and it showed up as she has the gene ..the Docters keep a very close on her .my niece has lupus and raynards . And my aunty has lupus which has affected her liver ..myself have full blown lupus and raynards and sjogens also utercaria ..my ammunion system just doesn't work its very faulty ...the worst I find is the fatigue if I don't keep busy . And I sit down I fall asleep.i am very worried about my daughter as I don't want her to go through what I go through . My son wont get tested even tho he has the butterfly rash .says he doesn't want to know ....his choice I can only nag so much ...hope your sister gets the care and attention as it is a long battle ...take care .x
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