Thursday, July 15, 2010

The Jabberwocky Pain Has a Name

It looks like the beast that has been causing the pain has a name, sort of.  It looks like it is  Rheumatoid Arthritis.  There is still some minor debate about it being "official".  I have all the typical joint pain symptoms, fever, and eye problems.  The rheumatologist put me on corticosteroids for a week and everything got better.  It was a great week not having the joint pain and not having blurry vision.  But, like all good things the medicine ran out and now I am dealing with the return of the symptoms. 

The reason that there is still debate about this being "official" is that my blood work came back negative.  I got the results from the receptionist and as she put it, "Everything is negative, and you are fine. You don't need another appointment."  I will admit I broke down and cried at that point.  I was so confused and upset.  I asked if I could talk to the nurse, and was told to leave a message.  I did.  I am going to call back again if I don't hear from her soon.  The reason I am so confused is the doctor said he was 99% sure it was RA.  I am still supposed to call back two weeks from my last appointment date to talk to the nurse about how the steroid treatment went. 

I have decided that I am going to wait until I talk to the nurse (and she talks to the doctor) before I decided that the receptionist is right and "I am fine."  I know that she doesn't know everything that has been going on. 

I have since talked to the nurse, who took note of the symptoms and I am now waiting to hear back from the doctor's office. Waiting and playing phone tag is really frustrating, especially when I was actually talking to the nurse and my phone died and I had to call back and start all over by leaving another message.

I did learn from doing some more research that it is possible to have RA without positive blood test.  It is called "seronegative RF factor."  "Some patients who meet clinical diagnostic criteria for RA set by the American Rheumatism Association fail to express RFs at any time during their clinical course."  I also found out that it could take up to 2 years to test positive for the RF, or I could never test positive for it.  So, currently, we are going to deal with this as if I do have RA and move on with life.  

This is mildly changing how I am going to tackle some goals.  I still want lose the weight.  That should help with some of the pain, less weight on joints = good thing.  The next thing I am looking at is going gluten-free for both of us and primal for me.  I plan on doing a couple of post on both of those ideas later on.  Right now I am still currently looking into different aspects of each and looking for recipes.  It does seem so far that cutting out the gluten should help with the joint pain, too.

I did do a mini-test for gluten-free (GF) this week.  We didn't eat anything that had gluten in it and then Thursday night I cooked pasta.  My stomach hated me and really hurt Thursday night.  Friday for lunch I took the leftover pasta.  Friday afternoon my stomach hated me and it hurt.  I am taking this as a sign that we are cutting the gluten as best we can.  Luckily, rice and potatoes don't have gluten because I am not ready to go totally primal or carb-free yet.

It also pushes up our desire to get pregnant.  Thus, the going to the OB/GYN and having this silly test done.  It isn't pushing the pregnancy issue up by much,  honestly just by a couple of months.  It just gives us a little more incentive.  The doctors all seem to think that getting pregnant will either lessen the flares or send them into remission for most of the pregnancy.  It seems that being pregnant fools my immune system into not attacking the joints.  That seems like a good thing, but right now I am only having flares every six months or so, and they vary anywhere from weeks to several months.  It doesn't seem to be nearly as aggressive as  some of the other cases I have read about, and I am really thankful for that.


Amy Van-Mod said...

Wow, this post really caught my attention. I've been following your journey and been hoping eventually someone could shed some light on what's going on, so I'm glad it seems like this might be at least a start to getting some answers.

What really caught me was the RA and gluten connection. My dad was diagnosed with RA in late high school/early college. He's always struggled with joint pain that keeps him from a lot of physical activity. About 4 years ago, he experiences some significant health decline and through a lot of research on my mom's part, she started asking MD's about Ciliacs (gluten allergy). Turns out he's incredibly allergic to wheat and it had worsened as he aged. However, his body (specifically digestive system) had been so beaten down by ingesting it all the time, that it lay asymptomatic and dormant for a long time b/c (though his body was slowly dying) his body wasn't strong enough to negatively react. After a lot of research and talking to a specialist, he's wondering if RA (for him) was a misdiagnosis of early stages of his ciliacs.

Not saying that this is your case (that would be super presumptuous, since I don't know any of the details) but felt it was worth sharing since Ciliac's isn't all that widely considered at least up here. Whatever the diagnosis, I'm glad that less gluten seems to be helping (and if you ever want some good recipes, my mom's done a lot of experimenting/trial and error and could pass some along). :)

Amy Van-Mod said...

ok, now that I've inundated your blog with comments, I'm done. :-p

Molly said...

Amy - Sorry for the delayed response (your comments got dumped into your folder in my email & I missed them) Whoops!!!

Thanks for sharing about your dad! I am still having a hard time getting the gluten out when we are eating out or traveling. At home I seem to do better. Lately, things have been calmer (aka not in a flare), so I am wondering if the smaller amounts of gluten has helped anything.

I appreciate your comments! So, don't worry about overloading anything!!!