Looking for answers, maybe in the wrong place

[Cerankin]

Almost a year ago--last Aug 25th--I woke up in the morning feeling really bad. I was dizzy and having spells of shortness of breath. I thought I was going to die. I went to the hospital that night and they found nothing wrong. Over the next couple of weeks, my dizziness and shortness of breath continued, and strange symptoms like joint and muscle pain developed. In between the knuckles in my fingers and feet, I developed swollen "lumps" that feel like they are filled with fluid. My heart started randomly skipping beats, which I could feel the pause as a kind of flop in my chest. When I took my pulse, I could feel that my heart was skipping 1-2 beats at a time. It would come in spells, not triggered by anything I could find a pattern of. I went to the doctor, and she did a ton of bloodwork. It came back that I had very high levels of strep anti-bodies, and an elevated WBC count. She diagnosed me with rheumatic fever and put me on amoxicllin for a month, in addition to anti-inflammatorys and pain medication. I asked to see a rheumatologist, who said my symptoms didn't seem consistent with rheumatic fever to him. He has done some bloodwork to see if I have RA. My results are negative for ANA, but my CRP is slightly elevated and my Vitamin D levels are low. He doesn't seem to think I have RA, and I don't know what to think. I take anti-inflammatorys and pain meds all the time. My joints ache, but my muscles seem to be really inflamed and tighten up a lot with movement. My heart has stopped skipping beats for a while, and my shortness of breath has gone away also. I was on steriods for a few days and felt great--back to normal. But the effects didn't last long. I'm extremely tired all the time. I'm 25 and I feel like I'm 75. Since my symptoms are so broad, I was wondering if anyone had any ideas. Really, I want to find out what's causing the bulges/lumps between my knuckles (symmetrical) in my hands and feet? Since that is so weird, I think if I find out what causes that it might explain the rest. The doctor's haven't been extremely helpful, and they look at me like I'm nuts. I think they see a young girl who looks healthy and kind of blow it off. They have hinted before that it's all some kind of anxiety issue, but I know deep down it's not. I haven't experienced any major changes or problems within the last year--I've actually been pretty happy except for this. Please, if anyone has any ideas, let me know.

[Cerankin]

I'm glad to hear about that--I will check it out immediately! It's great to hear that there is something that holds Dr's up to a certain standard of deceny. I will let you know what I find.

[catzz]

Allow me to introduce you to RateMDs.com!   Enter your state or province, then the alphabetical listings.  Most drs have patient ratings - some more than others.  Best way to get a sense of the dr you're checking out is to look for trends.  The odd isolated rotten review should not be taken too seriously and some simply have to be taken with a grain of salt -  but - if most of the commentaries reflect bad doctoring, misdiagnosing, poor dr-patient communication skills, rudeness etc etc, then best to avoid. Some interesting reading..    When I was in hospital, there was a nurse's desk with computer in my room and the 2 nurses I was chatting with who hadn't as yet heard of the site were glued to it during their breaks..........!

[Cerankin]

That's probably a good idea. I would love to have a rheuatologist who is really understandig and concerned with his/her patient's. I wish I knew of a site or something that would rate local doctor's at least for the major metropolitian cities, so you could have some idea what you are getting yourself into before you go.

[TrudieC]

It seems like your primary and you have a good relationship.  Ask him to refer you to a different rheumy who will dig and get down to the bottom of your issues.  

[Cerankin]

Thank you for responding. I tend to have "flares" of joint pain when there is a change in barometric pressure, particularly humid and/or rainy days. I think part of the problem is that I take anti-inflammatorys so much it might skew my bloodwork a bit, because it takes down the inflammation. I always start the day thinking I won't take any anti-inflam's so I can go get an accurate bloodwork reading, and then I'm hurting so bad and I feel like **** and the only way I can get off the couch is to take meds. I feel like I need WD-40 for my body, and I'm sooo tired. It's an awful way to go through life, especially being 25, this is supposed to be the time I look back on when I'm old and think 'those were the days...' when instead I feel like I should be a great-grandma.

Any tips from anyone on how to communicate better with doctor's? I get really frustrated, because I feel like they are downplaying how I feel or trying to make me seem crazy. I show the rheumatologist my hands and feet and he just says 'I don't know what that is, it could be RA but I don't think so'. So what the hell DO you think then? Yes, TrudieC, I see the rheumatologist regularly, every couple of months. He doesn't give me my meds though, my primary care does because he won't since I haven't been diagnosed with anything in particular. Why is it everytime a female doesn't feel well it has to be an attention/anxiety thing? I don't know about anyone else, but there are about a million things I'd rather do than go get poked and prodded by some a-hole doctor. I'm really trying hard to keep pushing for answers, part of me just feels like curling up in a ball and giving up because it's so exhausting trying to answers..Sorry, I had to vent for a minute, but if anyone has any tips for me, please let me know.

[TrudieC]

It can be very frustrating finding a diagnosis.  My rheumatologist isn't sure if I have Lupus or RA or both.  I have the watery lumps between the knuckles too as well as achy joints and lots of muscle pain and fatigue.  I am on plaquenil, iburprofen and Tylenol 3's for pain.  

You can still have Lupus with a negative ANA and bloodwork with both Lupus and RA (and I believe other auto-immunes as well) can take time to develop.  Are you scheduled to go back to your rheumatologist?  If so, you might want to do something (sun or lots of activity) that puts you into flare so that your bloodwork might show more.  For Lupus many people will go in the sun beforehand since that can often be a flare trigger.  It's not good to go into flare but if it can help you get a diagnosis and on to the proper treatment it is worth it.  Keep pushing and good luck.