- CASE FILE
I suffer from an on-going cycle of Joint Pain, muscle spasms, Idiopathic anaphylaxis, peripheral neuropathy, chills, voice changes, etc..
ABOUT THIS CASE FILE
In 2000, I began have joint paint and swelling following 2 bouts of strep throat within a month. I was given Prednisone. For a day it worked wonders. The 3rd dose almost killed me. I went into anaphylactic shock. For 3 years, I couldn't walk or get out of bed without pain medication. I was diagnosed with Rheumatoid Arthritis. No medication helped.
In about 2002, I began having muscle spasms and brain fog. I was diagnosed with Fibromyalgia.
In 2003, the symptoms resolved without mediation. Further testing showed that I do not have the RA factor, so my diagnosis of RA was dismissed.
In 2005, I ate food fried in peanut oil. It wasn't unusual; I had something peanut every day. This time it almost killed me. By the time that I got to rescue, I had no breath sounds in either lung. Since then, any peanut exposure triggers anaphylaxis. The most serious time was when I ate cashew nuts roasted in peanut oil. My lungs filled up with fluid and my throat swelled up. I got to spend 3 days in the hospital for that.
I went to an allergist in 2009 after having similar reactions to soy. My allergist did blood testing for peanuts and soy, given the severity of my reactions. I am not allergic to either. Based on my symptoms and tests, he felt that I have System Mastocytosis. Bone marrow biopsy was negative, and the DNA test for it was also negative. However, I continued to see a hematologist and my symptoms were treated as though I have a mast cell disorder. On bad days, I took between 25 - 50 mg of Benadryl every 4 hours, along with Xyzal twice a day, and Zantac twice a day. I still had reactions/flares.
In February 2018, I ate a piece of pizza and ended up with a 10/10 pain scale migraine. It was treated at the ER with Fiorcet, Dexamethesone, and Benadryl. For the next 3 months, I developed a headache anytime I ate tomatoes.
In March 2018, I ate a boneless wings meal from a restaurant that I frequent regularly. My tongue swelled to the point that I could not talk without biting it. I was treated at the ER with Dexamethesone and Benadryl. (I had eaten this meal earlier in the week with no problem, and have eaten it many times since with no problem.)
In April 2018, I ate a grilled chicken sandwich, bread and meat only. My voice raised to a pitch that made me sound like I had sucked in helium. Steroids and Benadryl in the ER did not reduce the swelling, so I was admitted. I spent 3 days in the hospital before the reaction was resolved.
Following this period, my hematologist said that he couldn't confirm that I had a mast cell disorder through his test, and referred me to a specialist at Emory Hospital in Atlanta. She spent approximately 15 minutes with me, informed me that I have no form of mast cell disorder, and sent me on my way. My allergist here in Albany, referred me to the Mayo Clinic in Jacksonville for testing and diagnosis. Their rheumatologist said that I don't have RA, but that I may have Fibromyalgia, but she doubts it. Their allergist said that I don't have a mast cell disorder. Following that, my allergist here in Albany sent me for testing for Acute Intermittent Porphyria, but the DNA test was negative. All of the doctors that I've seen have thrown their hands in the air, said that there's nothing more that they can do for me, and sent me on my way. I'm left flailing in an ocean of fear and pain.
I often have reactions of joint pain to the point that I can barely walk. Recently, I had one so extreme that I wanted to go to the ER for pain medication. We couldn't afford the $200 copay, and, since I can't tell the doctors there what's causing this, they would've classified me as a drug-seeker.
I never know what my day is going to be like. Just because I'm fine when I wake up in the morning, doesn't mean I'll be fine 15 minutes later. It may be joint pain, it may be hives, it may be muscle spasms, it may be peripheral neuropathy. When I eat, I may be fine. I may be headed to the ER with anaphylaxis or simply staying home and taking a massive dose of Benadryl if my voice only changes or my chest only tightens. I break out in a tiny red rash whenever I'm in the sun, which gives me an appearance of always having a mild sunburn. You only notice that it isn't if you look closely and see the thousands of tiny red spots. I woke up one morning with a face full of Petechiae, with no explanation of why. (See photos) I have a spreadsheet of the tests that have been conducted on me and their results available for review.