Being referred to a rheumatologist

[missgamecock]

My elbows and joints are STILL swollen and painful despite massive anti-inflammatories. Took Cate to the dr today and made an appt for myself for the joint pain and swelling. Cate weighs 21 lbs and is 28 inches long. Pretty good for her. She is in the 48th percentile for weight. She says she is doing great and to keep her cardiology appt on the 2nd.

As far as me, she is referring me to a rheumatologist. She seems to think that there is an autoimmune issue going on. Possibly brought on by pregnancy (not so much of a stretch seeing I have endometriosis and have had pe, both autoimmune issues). She said that the inflammation that is going on is way too much for a virus or anything like that. We both wondered if my IUD perforation (mine happened when it was expelled because it was confirmed placed 3 times) was rejected because of an immune issue. For now, anti-inflammatories and prednisone. I am supposed to call and let her know if the prednisone helps (I hate prednisone, it makes me feel like what someone would feel like on speed). If the prednisone helps, she said that's another clue this is an autoimmune issue. She said when I see the rheumatologist, that they have and will be running way more extensive tests to find out what the heck is going on.

What will the rheumatologist do? Any questions that I should ask?

[kara]

Wear your good undies cause they will bend all your joints, stretch you, things like that. They'll look at your skin, your fingernails, ask you 1000 questions regarding your symptoms, and things that you may not realize are symptoms and then order blood work based on their findings and the symptoms. Good luck. Let us know.

[missgamecock]

Fabulous. Isn't enough to have had pe. Now I get to be poked and prodded again. Sounds like it will be painful. Just curious, but what in the world will my fingernails tell? I need to start consulting Dr. Google.

[kara]

I wouldn't start dr google because you'll scare yourself half to death over things that are VERY rare. My rheum told me they look for a couple different signs through your fingernails. Forget what exactly though. They'll be gentle while flexing you. They are looking for damage, limited range of motion, rubbing, clicking, etc.., and whether it's joint or soft tissue. They'll listen to your lungs - the whole 9 yards.

Here's the thing. Don't get your hopes up about getting a diagnosis. It's more about ruling things out, unless you have an abundance of clinical and lab findings for a specific disorder. My docs have said that time will tell. As I get older, something more definitive might pop up. My MFM was scared about lupus and MS, and rheum won't rule out lupus or APS, but she can't rule it in either - even though I meet the Saporo criteria for APS.

I've started having joint swelling in my ankles and knees that I've never had before, and it's specific to the joint and not the rest of the appendage. And now I've moved so I have to find a new rheumie - which isn't as easy as it should be. OB thought another pregnancy might also unmask something more. It can be a journey....

[amanda]

Sabrina -
When I went to the doc they did several xrays of my joints to review and validate that the swelling was truly swelling. They also did all the things that Kara mentioned. I had a lot of blood drawn and then, when things came back wonky had to have the same panel again since there are several things that have to be validated several times before they can even begin to rule in or out certain things.

My doc told me it was hard to pin point an autoimmune issue too - that usually they treat the symptoms the same way anyway regardless of the 'diagnosis'.

Get ready for some predinsone because that's what it takes to get that inflammation down most of the time!

[missgamecock]

Yep on that now. It already is working which means my pcp was right. She said that if the prednisone helps that that was more of a clue it was autoimmune related. So do you have to stay on prednisone forever? Lord I hope not.

[milesymommy]

I wish I could remember, but a old friend of mine with lupus type symptoms took a lot of herbal supplements that helped her symptoms a lot - particularly the joint pain. Maybe try looking that up?

[nicw]

Sabrina i am also having problems with an autoimmune disorder. At this stage it has been diagnosed as an undifferentiated connective tissue disease and hopefully it never evolves into a defined condition.

I have non deforming arthralgia without swelling, fatigue, positive ANA etc etc and have just commenced pred for the short term. I am also noticing the benefits of pred. My Rheum has commenced me on Plaquenil as well which has long term benefits for arthritic symptoms and fatigue. It is a disease modifying drug. This drug should allow me to be able to wean the pred in the future.

Hope you find some answers real soon.