Do I also need a immunologist, a neurologist, a ...

[Sven]

Like many of you I have the symptoms but no diagnose. My rheumatologist says it can still be something else but he does not now what.

But would it not then be a good a idea if I saw a immunologist, a neurologist and so on (dietist, "allergist")?

The thing is I have "never" been sick so I do not really now what these guys can do for me. I have just read about them on Wikipedia but what can they do more specific to find out what can cause my  dryness and fatigue.

I have learned that you have to be well educated when you see your doctor so please educate me so he want bullie me the next time ("nah, you dont need that").

Thanks!

[irish]

I am wondering if you have a family doctor or a main general practice doctor who can help co-ordinate your health care.

Can you ask your rheumatologist for a referral to a neurologist, etc. I guess I am having trouble understanding if you have doctored for many years with no results or if you are just starting to doctor. Reading about what a specialist does is only the tip of the iceber. A person needs to go to the doctor and let them do the tests and rule out things. Autoimmune diseases are often the diagnosis of exclusion---in other words, they have to rule out what it isn't before they can start honing in on what it could be.

If you can see an immunologist it would be helpful, however, do not automatically expect that this will solve your problems. I was lucky cause I had a referral to an immunologist (after 40 years of doctoring) and when the doctor looked at me and talked to me for 5 minutes he diagnosed me. He did blood work and later confirmed his diagnosis. This is because he was very educated and had common sense and also, and this is the most important thing, he listens to what his patients tell him!!!!!!He has a practice that is centered on the many patients who have fallen through the cracks and many of them are autoimmune or immune disorders and he also has a good many with genetic problems.

He says "you know your body and know what is not right" and he listens. That is one of the key things. I argued with a good many docs over the years cause I told them that I had autoimmune disease and I was right. In other words, (the exclusion again) I had all these tests and nothing showed up so it had to be something autoimmune. And it was!!!!
Irish

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[irish]

Post 2

You can't imagine how many doctors appts I have had over the years. It is almost obscene. I kept track of them in depth for a few years and there were so many each year plus I had more dental appts over the years. Sometimes I would have 4-6 dental appts a month with my teeth issues and infections.

Nobody ever stopped and looked at me and asked "just what is going on here" and a person gets so they operate sick for so long they don't know any better. There is nothing to do but take a deep breath and keep on plodding along until you get a diagnosis. We have to be very careful not to antagonize our doctors though cause they have a "good old boys club" and they talk back and forth. They know who is hard to deal with and who is going to give them a rough time.

Working as a registered nurse I was privy to this and know that we can get on the bad side of doctors and limit our own medical care without even realizing it. The doctors don't want to deal with people who argue with them or take a lot of their time, especially when they can't find a diagnosis. I know cause this happened to me with the help of some very ornery/arrogant doctors at one particular office.

The one thing docs don't like it being told what you think is wrong, even if you are right. They need to be feed the information very gently in small amounts so that they can process it and come up with the ideas for treatments and tests.  What can I say, it gets tough on the way to diagnosis. Good luck IRish

[Julie]

EXCELLENT post, Irish!  You really summed up the reality of the doc/patient world.  Your posts are always very informative, but this one just really rings so true.

Sven, I hope you are able to sift through the clueless and unhelpful docs soon and find one that listens and manages your case to your satisfaction, which will lead to a diagnosis and treatment of your symptoms.  I personally, have found that my primary doc is pretty much worthless unless I just need a prescription refill. It was a good place to start I guess, because she did refer me to a couple of specialists,which got the ball rolling.  Fortunately with my insurance, I do not need a referral from the primary doc each time I see a different specialist.   So...once I saw one specialist, it was them that referred me on to others.  I still have trouble with all of them consulting and reporting back to each other though, in order for us to all be on the same page.  I always keep a copy of the labs and any important tests.  It's way easier than assuming that the reports were copied and sent on to the other doctors.

Most of us with Sjogrens start out with a primary care doc, then see a rheumatologist, who is more experienced with Sjogren's and therefore is able to work on the full picture in more detail.  My rheumy has referred me to the pulmonologist, ENT, GI, opthamologist, and cardiologist  Many of them drew labs that an immunologist and allergist would run.  I have yet to see an immunologist because those labs came back within normal limits (which surprises the heck out of me, because I have a really crummy immune system)!

If you go to a specialist that isn't willing to hear you out or refer you to other specialists, then I would find another doctor and start over.

Best of luck and good health to you!
Julie

[Sven]

EXCELLENT post, Irish!  You really summed up the reality of the doc/patient world.  Your posts are always very informative, but this one just really rings so true.

Yes Irish post was really spot on!

I am new with Sjogrens and new with doctors so I did not see it coming ... I was at my Doc the other day and I had about ten questions. He gave me seven (7) minutes (200 dollar) and on the last two of them he seemed disappointed that I was still there! I can really feel that I am "trouble" to him just because I just dont accept everything he says rigtht away.

But what can I do? My first was even worse. He looked at my negative bloodtests, pressed my fingers and asked if it hurts (it did not) and said "no, I dont think you have Sjogrens and even if you do there is nothing to do". I more or less had to beg him to give me some Salagen.

And in the country i live in there are not many to choose from. I have tried to contact doctors abroad for a second opinion but they does not seem very interested (even though I am willing to pay them what ever they want ...).

So I am really thankful for all the good advices I am getting here!

 

[gold55]

7 minutes for $200.00
yep you're spot-on with that Sven!!  Docs can really become weird too
if you don't act stupid and believe in everything they do or say.  I would
think they would be inspired by a challenging patient who wants to protect
themselves and who has studied up on their own disease.....but.....not happening here!
Instead I think challenged means competition to them which strikes their ego and the
curious patients become the ones they don't want to deal with!
 

[AAACGRL]

I have had some doctors that liked that I did my "homework" as they called it.  As Irish said (and I know because I worked in healthcare with doctors for over ten years) you have to bring it up so carefully.  But others-yikes if you so much as share what you have researched (no, not all of it is done off the internet LOL) they seem to feel you're trying to do their job for them.  My Rheumy will listen to my observations and so on but he still, for the most part, calls the shots. But I respect him as he's helped me so much.
Yeah they may "bill" $200.00 but the truth is after insurance processes the claim they're doing good to get half of that. But still..even half for 7 mins is a lot.   And if you're self pay then I want far more than 7 minutes of your time! hehe