I told them (the doctors) to do "all" the bloodtests on me but now I found out that they did not. They did all the "obvious stuff (Ro, La etc) but for example not my vitaminlevels. So now I would like to do it again.
Can you give me some advice and suggestions on what test to do?
Thanks!
My advice,
Don't go and TELL your doctors what to do. They go to medical school for years, they read medical literature, go to conferences and understand far more than any Googling patient could begin to understand.
Your doctors know what they're doing. If you're concerned your treatment is not up to standard, find another doctor.
My advice is to get a referral to a rheumatologist. They will know which tests to run because they have been trained to diagnose & treat sjogrens.
Howdy Sven, You and your doctor need to have a discussion. Have a written list of your concerns. Go over the list with your doctor and write down the answers. If you have found some information on the internet, that might apply to your condition, go over it with your doctor.
Many of us here have gone through the testing roller coaster. So don't be discouraged. Your doctor may suggest going to a specialist. The specialist will then make suggestions on what tests you may need.
If your doctor will not listen to your concerns, then you may want to go to a new doctor. This is something again many of us had to do before we finally found the answers we needed. So hang in there, do your research. Keep a diary and discuss it with your medical advisers.
Seeker
Thanks for your answers!
Believe me, I really, really would just lean back and let the doctors do all the work. But I can nor because some times they are just not so precise as I want them to be. If I tell them that I want "every possible" bloodtest done, regardless if I must pay for it myself, I actually expect them to do just that. Just as I expect my house to be painted green if thats what I told the painter.
Have you tried just going in to Quest Diagnostics or someplace like that and just requesting the blood tests and the bill? Most dr.s will do what they are trained to do - which part of that is staying within the bounds of your insurance - since they too have bills. If you don't want his expertise and just want blood tests dolled out, then a place like that may do it.
Of course, you really will be paying the bill. Your insurance will require and dr.s prescription for the tests. The drs. are bound to a certain extent. They have to use their trained, analytic prowress when requesting tests - otherwise patients would just be coming in, asking for stuff that's not necessary, and then we would all be sharing in the bill.
I know you offered to pay for the tests...but the dr. may not be able to do that - he's bound by contract to whomever he serves, and of course to the insurance companies he is billing. Not to mention, he will default to his training and experience - which I would hope most dr.s do. Also, you as a customer have choices - you can go to someone with a more extensive experience/knowledge base on SJS. They will most certainly know which blood tests to run.
If you're going in there with a tone and an authoritative voice and requests - there may be some passive aggression going on too. There's a book called "Wired that way" that you may want to read about personalities and which ones offer what to eachother. It may give you some insight on how to deal with certain personalities and even your own. I know I learned a lot about myself and thus changed the way I managed my techs. I get a lot more productivity out of them and they are much happier w/their jobs...more willing.
Good luck.
When doctors order bloodwork they have to put a diagnostic code down that makes sense based on both your symptoms and what the test might find in relation to your systems. They cannot just order willy nilly. You suspect Sjogrens. They tested you for Sjogrens antibodies. Now I myself am antibody negative. Only symptoms and lip biopsy confirmed the diagnosis. But they did the proper first tests so give your doc some credit. And keep in mind that without positive antibodies or other proof that your condition is autoimmune it would be irresponsible for any doctor to prescribe the type of medications you seek.
When I was experiencing symptoms but had no diagnosis yet, I had all sorts of tests run based on my symptoms including hormones, TSH, T3 and T4, vitamin D, CBC, CMP, C3, C4, CRP, ANA, etc.
Just tell him or her to write the scrip for the bloodwork, and tell him or her you will be paying for them,, maybe something will turn up,, to many of us have been tested and it came up negative for antibodies but have been diagnosed by symtoms only,
The bottom line is that it just doesn't work to walk into a doctors office and tell them what to do and what tests to run. You can get by with a certain amount of requesting, but sometimes a patient literally drives the doctors crazy.
I have seen this as a nurse and experienced it as a patient. It is a very fine line to travel. You have read all the literature and are convinced that you have sjogrens. There is not proof at this time and you still think that they should treat you. LIke was said earlier, the doc has to have a good reason and a code that can be used to have blood work done. If he has no code it doesn't make any difference who pays for it. There are Quality assurance committees at every medical facility in the world who are in charge of making sure that the docs abide by a strict code of ethics. A doctor can get himself in trouble big time if he doesn't adhere to the rules.
I don't know what to tell you except it took me about 9 years of mild doctoring and then about 8 years of #%&$ before I got diagnosed. My diagnosis was a total shock to all the docs involved. Not one of them thought I had an autoimmune disease and they all thought I was a crazy old woman. There is not a darn thing you can do except be patient, don't be obnoxious or demanding and sign up for every university study that comes along and pertains to your ailments. I did a Sjogrens study about one year after diagnosis with positive lip biopsy and low and behold my blood work was positive for the first time ever!!!
You get a doctor to help you with treating your symptoms. You learn to live with your ailments and keep on going. There is no one but you who can perservere through the maze of suffering and the bunch of medical docs you have to see to get to diagnosis. It can be a very slow, painful process and anger, resentment and bitterness only slows us down in our qwest.
THere is no magic bullet that will get you where you want to go. I can tell you from experience that trying to tell the docs what to do and what tests to run just doesn't fly. They are the ones with the MD after their name and we have to develop a keen awareness on how to deal calmly with each of our docs. If you go in with a whole bunch of things that bother you some docs just go into overload and can't deal with a bunch of things at once.
I have one doc who I have seen for many years. He gets downright depressed when he can't solve any of my issues. When he finds something he can "fix" his eyes light up and he is a different man. Just keep on keeping on and be appreciative for all that they do for you. Irish
While I trust my doctors (they are truly amazing), I don't think there's anything wrong with joining the conversation as an informed patient.
If you are experiencing Sjogren's symptoms, you might want to have your vitamin D levels checked and, as others have mentioned, your thyroid levels (making sure that they give you numbers and don't just say "normal"--you want a TSH below 3, not below 5.5 like most labs indicate).
A rheumatologist might have further ideas, but if you can't find one (or can't get a referral), it's possible to work through a general practitioner or to work with your eye doctor and/or dentist. You might want to try Restasis (for dry eye) and/or Salagen or Evoxac (for dry eye) if your doctors think your problems are advanced enough for prescription medications; these are specific to symptoms, not just for Sjogren's.
If prescription medications aren't appropriate for you, you might want to take a good multivitamin (with vitamin D3) and fish oil supplements. You can also use preservative-free eye drops (they are pricey, but worth it), sugarless gum, sips of water, and other over-the-counter treatments like adding turmeric, ginger, and other anti-inflammatory spices to your diet. Many Sjogren's patients, even those who have an official diagnosis, do very well with these simple additions. Make sure that you check with your doctor, though, even for seemingly harmless things like these; you want to make sure that you are helping yourself and not causing further problems.
Autoimmune diseases are excellent mimics, so it's difficult to say that you have one and not another, even with hallmark symptoms. Keep working with your doctors; the answers are often slow to come, but with time, you may determine the source of your troubles.
Thanks for your help!
I do (now) understand that doctors are sensitive souls that has to be treated carefully. I try to be humble, but also a little firm, when I see them. I try belive everything thay say but I add a little doubtfulness.
I have found a lab, talked to a doctor there, and they will do some more test (vitamin, protein, HIV, hepatit C, allergitests etc).
Thanks!