An Autoimmune Diseases Association survey found that "it takes most autoimmune patients up to 4.6 years and nearly 5 doctors before receiving a proper autoimmune disease diagnosis." This information came from the AARDA http://www.aarda.org/autoimmune-information/autoimmune-disease-in-women/
No one should have to suffer the way that we "lupies" do, waiting for a diagnosis. I realize that Lupus is known as the "great imitator", but testing for it should NOT be the last resort. Tests for everything else (hypothyroid Hashimoto's disease, MS, celiac disease, neuropathy, etc.) don't take 4-5 years to get results, so once all those other disease have been ruled out...testing for Lupus should be immediately started. That, in itself is another problem: I have had the ANA test 3 times; 2 were positive and 1 was negative. I have since found out that if you are not in a Flare stage, you will, most likely test negative. The next test is the Double Stranded DNA test - over half the time, it comes back as "inconclusive." Another test is a syphilis test, if it comes back positive and you really don't have syphilis, then it can be "assumed" that you have Lupus???? How can we possibly find a cure, when there isn't even a specific diagnostic test?
Finding the right doctor is a nightmare. You start with your family physician who diagnoses you with the flu. You go back a few weeks or a month later, with the same symptoms or a whole new group of symptoms and you get diagnosed with some sort of infection and are given antibiotics and sometimes something for pain. You go back a month or so later, with yet another set of symptoms and MAYBE some lab work is done and you are referred to a specialist that deals with whatever your symptom is that day (neurologist, nephrologist, chiropractor, dermatologist, etc). That specialist runs some tests and finds out you don't have whatever disease they thought it might be, so you are sent back to you family physician. It is a vicious circle. Don't get me wrong - I don't blame doctors, they have a hard job and they work too many hours and most truly care about their patients; the problem is that they are so busy and it's difficult to piece the puzzle together.
Now - try doing all of this without insurance. I have been turned down by 6 Rheumatologist's offices because they can't take anymore "cash pay" patients due to the new ACA rules. I don't qualify for help paying for ACA insurance, because I made too much money last year (I live below poverty level). I can't get medicaid because my disability case was denied and I am awaiting appeal, which will be sometime in the year 2015.
I do have the Indian clinics, but they do not do any pain management, nor will they give me a referral to a Rheumatologist, Neurologist or Ear Nose & Throat specialist.
I have a growth in my mouth that has quadrupled in size over the last 6 months and can't get it removed because they say "it's not a life threatening condition." How do they know? No one has done a biopsy of it. How do they know it is not life threatening?
I have a pain in my right thigh bone that has me completely worried. It is not my "normal" lupus pain - it is constant and it radiates from my hip to my knee and it is coming from inside my bone. I can hardly think straight because of the constant pain. But I am told "your bones don't feel pain." They don't? Hop inside my body and live for a day and then tell me that. A bone is alive and has blood going to it - how does it not feel pain?
I have a primary physician, but she is limited in what the IHCRC allows her to do for me. She always tells me to come back to see her in 2 months. The clinic won't make the appointment for me while I am there because, "we only book 2 weeks out, you will need to call 2 weeks before you need to be seen and schedule your appointment." So I call everyday at 8 am, starting 2 weeks before I am supposed to go back and can't get an appointment because she is already booked. If I am lucky, I get seen by MY doctor twice a year; otherwise, I see the "walk in" or "urgent care" doctor. The problem with those doctors is that they are limited to discussing ONE symptom and cannot give refills or request lab work and can only do an x-ray for emergencies.
I have jumped through every hoop that I have been asked to jump through. I have hit my head on every brick wall that I can find. I am knocking on all the doors - when will someone answer?