When you are facing so many unknowns with your health, you’re no longer living but rather, just existing day by day. That’s pretty much me in a nutshell right now. I finally had it out with my primary care physician and spoke to her on the phone for over 35 minutes yesterday. It was painfully obvious, that she had little to offer in the realm of medical advice. I knew more than she did and had asked for a simple test to be run, to rule out celiac disease which accompanies this auto-immune disease that I suspect I have. It took me educating her on my symptoms and what they implicate, and how I need to rule this out too. It may not help us in our quest to get a diagnose on the auto-immune disease, but it may shed some answers either way.
The ANA and Rheumatoid Arthritis panel, CBC etc came back negative or within normal ranges. But that doesn’t mean anything. People go decades before they show as ANA positive. I suspect I am seronegative hence my results.
I initially thought this might be MS, but was hold by a few doctors that I would present clinically different. So I dropped that as a real possibility. However, something did come back as abnormal. It was my uric acid. According to how this lab performs the test, a reading of 3.1 or above is considered normal. Mine was 2.6 which means I am low in uric acid. This is not as common as being high in uric acid (which eventually leads to gout). When reading up on ways to increase my uric acid, I found that patients with MS show low uric acid during periods where their MS flares up.
Now in and of itself, low uric acid doesn’t point to much. But I suspect that my auto-immune disease also shares this clinical symptom. I know what I felt. And I know what I was going through for six solid days. My body was being the attacked and I felt something destroying my myelin or whatever is part of my central nervous system. I would hear an incredibly loud noise in my ears- like that low deep sound you hear when the TV goes blank and an emergency broadcast system message appears on your screen. Once that started, I would then feel heat in a certain part of my body. This attack it was all centered around my right eye. And that’s the eye that my optometrist found a vision issue which can’t be corrected. He’s fixed my prescription and out of the blue, I suddenly have a misshapened cornea, whereas my entire life, it’s been normal. I now have to wear weighted contacts that fit precisely on my cornea. Normal contacts move slightly when you blink. But I won’t be able to see out of that kind, which might explain the fuzzy vision.
Since I suspect this is an auto-immune disease, I have gone nearly vegan (I will eat salmon, tuna or other wild caught fish). I also have cut out all wheat, gluten and nightshade plants. I’m not going to lie. I’m going to miss visiting the top restaurants in LA for our weekly date nights. I can’t take the risk that some cook uses corn oil instead of avocado. I can’t put anything into my body that promotes inflammation. I had no idea just how inflammatory dairy, meat, corn, oils etc were to someone suffering through an auto-immune disease.
The good news is, I contacted an expert in this auto-immune disease. He is based in Los Angeles, wrote a book about the disease and even sits on the board of directors for the foundation that educates the public about it. If anyone can figure this out, it’s him. And- he’s agreed to take me on as his patient. I see him at the end of this month. Considering who he is and that other recommend rheumatologist said they couldn’t even see me till November, this was a huge blessing.
On an emotional level, I burst into tears last night, worried that I am still so young. I went 3 years between attacks. And I can’t help but wonder- Can I endure 3 attacks every decade? Will neurological damage occur at some point? Should I start recording messages to my children and leave them in an email account, so that they remember their mother…the one not affected yet by this disease?
Yeah that last one…that’s the one that made me bawl.
It’s just so hard. So hard to fight when you aren’t even sure what you are fighting exactly. Just weeks ago, I was running 25 miles a week. Today, I can barely walk 2 miles. I’m a fraction of myself. I’ve lost 6 lbs in a week and I’m trying my best to focus on not losing anymore. I haven’t been this thin since high school. And it’s not a good thin. It’s a sickly thin. I can see it when I look at myself in the mirror. I see more of my jaw and skeleton features coming through. I see it in my eyes. I’m not the same woman I was before our trip.
Even one of the regular checkers at Whole Foods pulled me aside and asked me, “Are you ok? You don’t look well.” And one of the other guys said just yesterday, “How are you doing?” I replied, “I’m doing somewhat ok today. Not as good as two days ago. I feel very weak and have a lot of fatigue.” We started discussing auto-immune diseases and he said, “It’s crazy how fast this all happened. Once second, you’re this healthy runner. And the next second, it’s serious.” I said, “I know. That’s exactly how it feels to me too. I lost 6 lbs in a week. I already saw I was going through muscle wasting. It’s incredibly frightening just how quick your body can go.”
And frankly my friends, I don’t know how far my body would truly last if I endured a sustained attack again. Everyone likes to think they are invincible. I know I surely did. Just weeks ago, I was posting push-up videos on my FB feed every day, cranking them out. I felt he strongest I ever have. Whatever this is, annialated me- and quick.
I know I have to push through. That I have to regain everything I have lost. And train hard to get my body in peak performance. But I can’t. Not yet. The fatigue is still too great.
But I am fighting. Know that much. 2CH is definitely a fighter and I’m going to learn everything there is to know about T cells and lymphocytes and cranial nerve damage and what my body needs to repair the damage caused from these attacks.
If if you get a chance, watch the Ted Talk from Dr. Wahl. She cured herself from MS. It has to do with diet and your mitochondria. And it’s fascinating stuff.
So that’s the latest my friends. Please continue to pray. I need it….Lots