Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hello. I am 43 years old and suffer from secondary Pseudotumor Cerebri or secondary intracranial hypertension. A condition where my body produces more cerebral spinal fluid then it can drain off essentially causing excess pressure that squeezes the brain and spinal cord causing symptoms like that of a brain tumor. One of the primary causes of IH is autoimmune disease like lupus or RA. I've had a positive ANA for as long as I can remember with other positive autoimmune blood tests. I get occasional kidney and chest pain. Sores inside my nose. Fatigue and joint swelling/pain. A day in the sun gives me low grade fevers and makes me sick. I've had kidney disease and for years suffered with UTI's. My rheumatologist suspects Lupus and is currently redoing bloodwork for the 3 rd time in three years. He suspects lupus, but I'm tired of being sick. I'm tired of seeing doctors for this issue or that and having them treat me like I'm crazy for individual symptoms that are possibly explained by a Lupus diagnosis. How did you guys get a diagnosis? How long did it take?
It took 30+ years for my diagnosis.
I take Humira injections every ten days and Methotrexate 15mg once a week. It controls the inflammation and keeps the chest pain / heart arrythmia at bay. Was also on low dose Prednisone for a long time but did not tolerate it well so went to more frequent dozing on Humira and off sterile and it has worked well. Haven't found anything for rash / lesions and sunlight sensitivity so I just live with them.
Sounds like you have compounding problems so that has to be frustrating. My Primary Care Dr is wonderful and take the time to work through all my health issues and review records from other Drs. I see to stay on top of things. I would say that has made all the difference in the overall treatment of my health.
I wish you the best in your search for answers. Dont give up and don't give in... there is hope for all of us.
You ask how long it took us to get diagnosed... answer: I was without any diagnosis practically most of my life... I suffered acute kidney failure and the ambulance brought me to hospital in a coma with uraemia when I was a little over 17 years old... fortunately my kidneys recovered slowly when I "came out of" the coma... and I was diagnosed with chronic proliferative glomerulonephritis when I was well enough for a kidney biopsy - one year later...
...Ten years later I suffered two cerebral haemorrhages due to an obvious flare-up causing my blood pressure go "sky high"... I survived without any handicaps... but it took a long time...
Then I suffered from chronic osteomyelitis on my ankle after a fracture which was messed-up during four unsuccessful proceeding operations... until finally I came across a real professional medical specialist who saved my ankle and leg from the danger of amputation because he knew what he was doing when he operated me once again... from the on my leg was ok... after I had recovered...
... 4 years later I suffered a massive stroke from which I had to recover for the next few years few years (learning to walk and speak and think again)... getting my languages "back into proper order" and not mixing up any more languages...
The I had enough of remaining a Victim of unprofessional doctors on the NHS and asked the Department of Health to please sent me to the Continent with an European International Health Paper (to pay for the medical bills) allowing me to be finally diagnosed on the Continent in a real professional hospital and in 1995 I finally got "my" Lupus plus all the other diseases like Antiphospholipid Syndrome, Vasculitis,, Sjoegren's- and Sicca Syndrome, Photosensitivity and drug-intolerance to medicines diagnosed...
After returning to London I was still left without proper NHS health care and lots of medical problems and again I applied the Department of Health to grant me another European Medilcal Document to pay for my medical bills and I was sent to another Continental professional hospital where I was finally diagnosed with MCTD as well and suddenly all my symptoms made sense and were "not in imagination" as all NHS doctors/specialists had tried to convince me in London for many years...
After returning I had all my diagnosis but I had problems every since to be accepted by any NHS GP or specialist... I even received in April 2005 an official letter from the leading NHS doctor of my local health authority that no SLE/MCTD specialist can be located for me in Britain... the only option was to be registered with a rheumatologist who "had an interest" in SLE/MCTD. I saw this rheumatologist every three months and gave him blood tests every three months... whom I trusted not only because he had studied in Cambridge and had best references but the nurse told me he also had "connections" to a very leading family in Britain... this rheumatologist also checked my kidney function regularly...and I gave his nurse my 3 monthly blood test as how my kidneys were functioning like Creatinine, Urea (Bun) Potassium, Sodium and many other SLE-MCTD related blood tests every three months...
... This rheumatologist never informed me that I had reached end-stage kidney failure despite his checking my health regularly for quite a few years... I only found out in August 2006 when I was brought to A&E and they wanted to keep me in hospital for dialysis preparation... I refused and went home to research at home for special kidney diets... fortunately I have been a vegetarian since my kidneys first failed in 1971, and fortunately I never drank alcohol and don't smoke and that made it easier to refine my vegetarian diet even more .. and my "two little fighters" are still functioning... hopefully they function a little longer without any dialysis and hopefully I am lucky soon to locate an NHS GP and an NHS Specialist who I can rely on because they have integrity, character and medical professionalism... until then I am afraid I am forced to pay for all professional medical services like my monthly Creatinine, Urea, Potassium and Sodium und cut down much more on everything else... and as an extra luxury I make sure I can afford a full blood tests once or twice a year to make sure I am not missing anything...
...Of course, I did put my complaint about these NHS doctors who had succeed to mess up - not only my very promising career - but certainly my life... and traumatized me in a terrible way... but in England only NHS doctors are protected and they work in groups and support each other... complaining messed-up NHS patients are being deliberately isolated and not assisted by anyone... no Charity/Patient Association helps them (most Health Charities are directly or indirectly financially supported by the British Medical Association) and authorities are afraid to take on or "criticizing" NHS doctors... solicitors in Britain don't dare to take on NHS doctors or - God forbid - criticize NHS doctors - because solicitors/lawyers/barristers or their families need NHS doctors themselves... one day... and they could not risk to get themselves a "bad reputation" with NHS doctors...
The only way left in Britain is to pay privately even if a patient like myself cannot afford it... I can't afford it but I have no other choice...
This is how long and terribly wrong my road went ... Don't stop to get your answers for a diagnosis and be as firm as possible to get a diagnosis. Best thing is to write down your symptoms before you go to a doctor that they realize you mean to get a diagnoses... my bad luck was my own optimism, hoping things would get better one day and the fact that I always look good, even if I feel dying and therefore I was never believed at first...even though I was always level-headed through all my life...
Good luck from Kristina.
If you don't have the right doctors I believe they will do more harm than good. That's why I don't see MD's anymore, the ones I saw were arrogant in that they couldn't find the problem so it must have been me who had the problem. My doctors are DO's - doctors of osteopathic medicine. Their approach is different, they lean more towards natural remedies than drugs, they take a more logical approach. Just because the lab results don't confirm what they're thinking, they treat me and the symptoms that I present not the lab results. My dermatologist that did all those biopsy treated my lesions as if they were lupus and the lesions responded to the treatment. He allowed his intuitive self to lead and not the text book.
I take Plaquenil and Naproxen for the lupus and I use Nesonex for inflamation of my sinuses. The Naproxen I just started taking in the fall but it is not working very well, I'm going to have to get something else for the pain. I also use advair and ventolin for inflamation of my lungs and I have HBP and I take Bystolic and HCTZ, a directic for that.
I've had one positive test when I had a flare that put me in the hospital but it was right on the cusp of not being positve at all and I can't remember what it was. I going to have to look up some of these test you've had, I've never heard of them.
I hope my doctor has a complete diagnoses for me tomorrow. (and those that haven't been diagnosed get there confirmation of what ales them) I can't see anyone going through it all for so many years not knowing. (or the doctors know knowing)
I must say, you all have to be so strong to handle all that frustration of doctors. Keep the strength flowing.
I one was in the hospital for a week because i went to the er with the worse headache ever.they did a spinal tap and wisked me to a different hospital thinking i had a brain bleed because the numbers were so high for blood in the spinal tap.But the mri didnt show a bleed.so srange.thats been my life,wierd symptoms that are unexplainable.Blood pressure that surges up for moths to dangerous levels,to then come back down .no one ever knows.
I'm trying the dr route again.My ankle and foot on the left side is hurting unbearably and swelling.I see a new rhuemy this Wednesday and hope for a diagnosis eventually.
I wish you all the best monkeymom!
Have you had any Crainial Sacral work?? when I read your post, immediately I thought you should see a Crainail Therapist. Please look into it, read about it. Upledger Institute has Liscensed Therapists all over the world and they should be able to locate one near you. I hope you consider this.
please keep me posted if you do see one. good luck !