I have some good, but also maybe bad, news. A brief recap — a month ago, woke up with a random swollen ankle, it was so bad that I could not walk right for several days. I went to the nearest urgent care. The x-ray came back normal, but looking at my ankle, the doctor told me that it looked like rheumatoid arthritis. I also explained to her how this has been happening for over a year now, random swelling in my knees, wrists, hands, and mouth. She told me I should establish a primary doctor and then get bloodwork done. In the meantime, waiting for my appointment, I did a lot of research and found all of my symptoms to be completely identical to RA.
So, I found a primary doctor and set up my appointment. She was a very nice doctor, although spent most of the appointment just trying to sort out my overall health and background information, since I was a new patient. She really did not spend much time discussing my ankle (at this point it was almost completely healed) except that she would have me get bloodwork done. She wanted to test for RA, along with general nutritional, liver, etc factors.
Next, I got my bloodwork done last weekend. Just today, I received my results, and now I am feeling very mixed. The results for RA-factor came up negative! I’m feeling very confused by this, so obviously I did some googling and did see that people can suffer from RA without having the factor in their bloodwork, known as “seronegative” (medically reviewed source) — as many as 30-60%, and the cases of RA without the blood factor is increasing with time.
I was able to quickly contact my doctor online, who then told me that perhaps I should see a foot doctor. This is puzzling, because my symptoms have been affecting every part of my body — again, my knees, wrists, hands, arms, mouth, everywhere! I’m not talking about muscle soreness or light pain — when it hit my knees, I couldn’t walk right; when it hit my wrist/hand, it had blown up like a balloon; when it hit my jaw/mouth, I couldn’t eat anything crunchy.
So, I’m just feeling very confused. I can’t see a rheumatologist without a referral. I do plan on going back to this primary doctor in another year for an annual exam, in which I will get bloodwork done again, so maybe my results will change then? For now, I do have a collection of braces and joint supplements… I also know there are diet and lifestyle changes that can help… I’m just really exhausted using up all this time and energy just to end up frustrated like this.
You hear so many stories of people with autoimmune diseases that do not receive proper diagnosis for years because it’s not something that most doctors acknowledge or take seriously enough. You hear about all kinds of diseases that go undiagnosed because doctors won’t listen. While I know that doctors have the extended medical expertise, at the end of the day, you are the one who knows your body the best… If my joints are not damaged, then I question if it’s even worth it trying to go to a million different doctors convincing them that something is wrong with me…
On the plus side, it felt really great to see that the rest of my bloodwork shows great health. My liver is good, my kidneys are good, and my nutrition is good. My protein and calcium levels are perfect. My cell count seems right on track. My oxygen and carbon dioxide levels are good. So yes, that is a very good feeling! Especially as a vegetarian, and also as a picky eater, I have been a little worried about not getting enough nutrients. But everything looks good.
This health scare has been a wakeup call for me. I really do think I have RA, which the first doctor agreed on, although my bloodwork right now says otherwise. In this whole month-long process (which has felt like so much longer), I have become so much more aware of health — with friends and family, also with total strangers. I’ve now witnessed people with severe cases of RA, so bad that they are sometimes put in wheelchairs, or going to physical therapy, and so on. And I know that’s still a possibility for my future. I am still very young and it’s good that I am catching these things before it gets worse.
The thing is that you never know what will happen to your health — I always knew that but now I am really feeling that. You could wake up one day with a joint disease, or with cancer, or with God forbid anything. I have no idea if my health will be much better or much worse several years from now, assuming I am still alive! Nobody knows, we just don’t know. So, I am extremely thankful for my health. And my heart truly goes out to those who’s health fails them, and I pray and wish for the best for everyone.