A "brief" intro before I start drilling you all with questions:
In May 2015 I took a trip to NYC with my family. Walking tours for days took their toll on me and I came back home with very swollen and painful legs and feet. I could barely walk. After ice/heat/rest/elevation for several days, things were back to normal.
One month later I suddenly get pains in my right leg, like in the tendons and ligaments behind my knee. Few days later, the left leg feels bruised and tender in the knee area (NOT in the knee joint). Both legs are feeling swollen. My GP examines me, orders RA/Lupus test, refers me to a Rheumy, and prescribes Celebrex (despite my reminder that I'm allergic to Aspirin/NSAIDs). 3 doses of the Celebrex and my chest is tightening more and more with each dose...GP agreed I should stop taking it.
Prednisone is prescribed. Now my right arm is hurting too after a bit of writing. The rheumy appt is 3 months out, the pain increases, and I'm getting weaker day by day.
While waiting on rheumy appt, I go a different direction and see an integrative doctor. Test results show I have low Vitamin D and very low cortisol. Taking Vit D was a big help, but her methods to raise cortisol caused other problems. I eventually stopped seeing her. Meanwhile I also develop an itchy rash on the back of my neck that won't go away. Hives?
Late Sept 2015 I hobble in to see the Rheumy. Exam, X-Rays and very basic blood work reveal nothing. (I say it's very basic because another doctor described them as "taking my temperature".) Rheumy says it's Fibromyalgia and prescribes Gabapentin. I'm very hesitant to accept this as a final diagnosis and much more reluctant to take an Rx for it. I also ask if the rash is a symptom of fibro. "No. You'll need to see another doctor about that." His best advice was to educate myself as much as possible about fibro.
I start digging online and end up at a fibro forum. The way the fibro patients describe their pain just doesn't fit what I'm experiencing. So I ask them very specific questions. When I ask if anyone else had a problem with hives, a very avid researcher suggested I read up on mast cell disorders. Wow! It was like reading my own medical history! Drug reactions, food intolerances, unexplained pain, asthmatic responses...It's all there!
I gathered my personal info, printed out research and headed to my GP again. I thought I'd have to convince him that I'm not insane, but lo and behold, he readily agreed with me. BUT, he didn't want to be the one to test me. His reasoning was he's not the one to treat me for it, so refer me to a specialist (Allergist) that can test AND treat. Made sense. I was relieved and felt like I was finally on the right track.
So I get to the Allergist and give a shortened version of my history. I had my GP's backing so I didn't figure I'd need to "sell" my theory in order to get tested for a mast cell disorder. But during the long pause as the doc looked at the computer, I said, "I know these disorders are rare. Is it far-fetched to think that might be it?" Without hesitation he said, "Yes. Most people who come through here have nothing like that." So he did a lot of allergy tests, repeated previous tests, but did NO test for mast cell disorders. Big Shocker: Test results normal. RAST test gave me a list of "low" allergies (sensitivities) that I had figured out years ago. (Mostly high salicylate foods and wheat which I've avoided for years) So unless I want to go in for allergy shots, this doc has nothing more to offer me. His staff made this pretty clear.
One kind staff member, the office manager, was given my records in order to fix a glitch in the online patient portal. (I couldn't access my test results) My records caught her attention because her mother has masto! The manager wanted me to know that it took over 10 yrs and a trip to the Mayo Clinic before she was diagnosed. She said if I suspect it, don't give up, but the allergist she works for is not the doctor that could help me. Her suggestion was take all my test results back to my GP and have him find me a specialist that actually treats mast cell patients. (He thought that's what he was doing!)
Since December I've also been seeing an alternative doctor trained in nutritional balancing. With the supplements that he's determined are right for me, I've made improvements with many symptoms, but the leg and arm pains remain. I'm still not able to walk, stand or even sit without my legs elevated for more than a few minutes without a lot of pain. This disruption to my life is what causes me to keep pursuing tests and answers. But honestly, I'm running out of patience. I've lost any bit of trust I may have had in doctors. I hate the ongoing cost of tests that reveal nothing. I'm tired of expending the effort it takes just to get through a doctor's appt.
I'm thinking if I'm on the right tract, I would be considered a "Leaker", not a "Shocker". My life isn't at stake, but my quality of life has already diminished. My GP asked me a good question: What do I hope to accomplish if I get a diagnose of a mast cell disorder? My concern is if this is progressive, it would be better to find out sooner rather than later, right? And if my pain is related to mast cells, wouldn't treating it ease the pain? Would a "simple" tryptase test give me the information I'm looking for? Do any of you suffer from pain as a result of your disorder?
I'd really appreciate input from the real experts, those who deal with these disorders daily. Thanks in advance! So sorry about how long this is. But I guess that's how we all start, huh?