Posted , 5 users are following.
hey im just wondering dose anyone in this group have seronegative lupus? if so how did you go about getting dignosed? I have been told by a cosnlant that I have the symptoms to match up a digonese but they wont dignose me as it wont show up in my blood.
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pam_87693 seanto
Posted
Hi yes I'm SERONEGATIVE to Lupus and to Sjogrens but that doesn't mean I haven't got them! To be SERONEGATIVE you may have arthritis be it RA Psoriasis type or osteoarthritis and to have been diagnosed with pain for more than 3 months. So you have to think back to when all this happened and why, as Lupus is a very difficult disease to predict even by a top professional. So I'm 69 and can remember I had mouth ulcers age 3 then I was very ill as a child I'm hypermobile too but that isn't a disease but could be a contributory factor. My mother gave me Lupus and PsA then my hypermobile father messed up my hormones and I was really in a terrible state during my teens. However still however ill you are you must have a marker in your blood to have an autoimmune disease this is called an ANA your GP can do this its a simple blood test. I hope this helps you.
seanto pam_87693
Posted
I am little suprsied how you open your reply with saying you have it but end it saying that it needs to show up in your bloods as that in itself controdicts it self. As to have serongativety you wouldn't have ana markers. In fact the word pretty much just means testing negative for blood tests. So there for its possible to have coctail of symptoms and it still be lupus. You dont even necessarily have to have things like ra or other conditions it could be straight up lupus. The only difference being that seronegative lupus is harder to dignoses as lupus is to do with you immune system that can show up in blood test with things like ana.
I have a lot of symptoms related to lupus in fact I belive I'm going through whats known as a lupus flare up. As I have spent a week and half with Fatigue, muscle pain/weakness in legs, arms and ribs. I also have/had stomach ache and nausea that gets worse in warm environments. Yet I am told I dont qulify for anything more than pain meds due to not having it in my blood but the pain meds do almost nothing. Quite often it takes away the pain for short moments but then comes back as im not targeting the clasue of the pain. So I was suggested to use this website by "a gp" to help find a treatment plan. I decided to start off by using the symptom checker which told me it might be lupus like I suspected. So I came to the forum to figure out how to get help for seronegative lupus as no one other than my nice gp whos on holiday wants to help me.
margaret22116 seanto
Posted
Yes Lupus will often not show in blood tests like Behcet's and all forms of vasculitis. There is no absolute blood test. They are doing work on this in Cambridge at the moment at Addenbrooke's. They are trying to develop a blood test to use in diagnosis. Let us all hope they can do it soon. So many people are suffering and not being diagnosed. So sad.
a55134 seanto
Posted
What kind blood tests have you had? All my ANA Direct tests come back negative but FANA come back positive. 35% of all Lupus patients test negative on ANA Direct. FANA testing is considered the gold standard.
Also, don't be discouraged if you keep testing negative. I've heard of cases where patients are symptomatic for years before testing positive. Additionally, people who test ANA positive, may test negative in the future. This complicates diagnosis and one of the reasons it can take years for doctors to determine what is going on.
Have your read "The Lupus Encyclopedia"? I highly recommend it. It helps explain a lot about all the tests involved.
seanto a55134
Posted
In the first ever appoiment I had with a rheumatologst i had all of this tested. lgs, direct coomb's, u&e's, liver enzymes, ana, ena. They all came back normal appart from fbc in which my lymphocytes was slightly low. I'm not sure what they test when I get re sent i just assume its for the same stuff as they call it rutine.
Im not discouraged as such im just annoyed that I can turn up too see someone whilst ill to be told I dont qulify for help. Like how am I supposed to make myself feel better if no one will sit down and tell me whats going on? I can go around and say i think i might have lupus but its not the same as being treated for it. Hopefully one day I might show up on bloods or I'll find someone to help me without bloods. Also I think The Lupus Encyclopedia might be one of the few things I havent read yet. I've tried to make myself cluded up on it all by reading most webistes going as sadly I'm pretty much a broke uni student but thanks anyways for the suggestion.
a55134 seanto
Posted
I strongly recommend that you request a copy of all your test results. Luckily my current rheumatalogist posts them on an online portal so I don't have to wait until my next appointment to see them. It gives me a chance to review and write down any questions I may have. I usually make my rheumatalogist go over my results and explain it to me. I ask her to explain her reasoning behind the tests she orders.
Also, test results are also good to have on hand when you meet with any of your other doctors or if you switch rheumatalogists. I find it makes my appoints more productive.
You should be getting blood tests done every 2-3 months. Ask what kind of ANA test is being done. Here are a couple of links that explain FANA:
http://www.healthline.com/health/antinuclear-antibody-panel#Overview1
http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Antinuclear-Antibodies-ANA
I really encourage you to read The Lupus Encyclopedia. See if your university library has it. Christmas isn't too far away, so you can ask someone to get it for you as a present (or several people to chip in). Google Books has a preview of the first 60 pages: https://books.google.com/books?id=xlfBAwAAQBAJ&printsec=frontcover&dq=lupus+encyclopedia&hl=en&sa=X&ved=0ahUKEwjkuPmYnt3OAhVLpB4KHQhfCMsQ6AEILDAA#v=onepage&q&f=false.
Also, see if there are any events in your area. I'm in the US and my local Lupus Foundation chapter holds a yearly summit. It was REALLY informative and connected me with a bunch of resources. It's where I learned about The Lupus Encyclopedia, the author gave a presentation and did a book signing.
I completely sympoathize. It is very annoying and frustrating to try to get treatment and be shut down because there is no official diagnosis. Over a year ago I went to the Emergency Room because I was having a lot of trouble breathing and chest pains. I was there for 4 hours and all the routine tests came back normal. The doctor who treated me basically threw his business card at me and told me to go home and keep taking my medication. I was stunned and just left, still in pain. I wish I had stayed and advocated for myself by insisting on a second opinion. I did go to my other doctors and through them receive treatment and got more tests done.
So, I advise you to be persistent and insist on getting answers. If you are not satisfied with the answers you get or the care you are receiving, switch doctors. I know it's tough when you're broke and have limited resources (I was there a year ago), but the benefits of getting proper treatment are well worth it.
Vicki_Jean seanto
Posted
Hello, I know this thread is a little old but I thought Id reply anyway.
I've been fighting throught the last 16 days of what I suspect to be a seronegative lupus flare up, been in hospital 7 times now and all they will do is fluids and minimal pain relief despite obvious pancreatic, kidney, stomach, lung, and now brain involvement thats developed over the last 2 weeks.
I did test positive for ANA when I was reviewed by a rheumatologist 3 months ago but she dismissed it, as well as not bothering to listen to my 15 year history of symptoms. very frustrating when they will only treat you if they can see markers in blood, even when the inflamation and other symptoms are visible.
I still don't know why I only sometimes show imflamatory markers.
On 2 occassions in the last week Ive have a ER doc and a specialist tell me the only way I will get an answer is by going to my GP and getting them to prescribe steroid therapy and if it helps my condition then that is my diagnosis... or as close as I will get at this point, basically until my organs start noticably shutting down they don't care.
So I went to the GP and started 25mg of Prednisolone today for 7 days and If it improves then I guess I'll be continuing therapy regardless of no diagnosis.
it's pretty far from perfect but at the very least I have managed to start correct medication. not sure if that helps, but I like to think every peice of data helps us build a bigger picture.
margaret22116 Vicki_Jean
Posted
I am in touch with a lot of vasculitis sufferers in the States through a helpgroup. I might ask for advice from them. What state ard you in?
Vicki_Jean margaret22116
Posted
Funnily enough I'm actually in Australia. Our health care system is pretty shoddy at the moment. Gp's want specialists to make the diagnosis but rheumies only care whats in the blood. I had a total of 2 appointments before she discharged me from her care. One for bloods and X-rays and one for the results. She took absolutely no interest in my health history. Worst part is I waited 3 years for that appointment.
Unfortunately I haven't been able to see my regular GP since this flare began as she has been away with her own health problems. Am hoping to see her next week or else I will be searching for someone else to see who specializes in lupus.
As of tuesday ive been showing signs of slowly progressing aseptic meningitis.
Once the hospital made sure I wasn't infectious they sent me home despite little to no improvement. The whole thing has been unbelievably stressful. I haven't been able to get more than 2-3 hours sleep at a time because of the pain, plus the tenderness of recovering from a lumbar puncture.
My partner wants me to go back to hospital tomorrow but I'm exhausted and not sure they will do anything. Twice now they have not done a brain scan, even when asked for by my temporary GP.
If my fever is still climbing tomorrow I might not have a choice.
Goodnight, Vicki Jean