Susan
Guiding Light
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I Love YaBB 2!
Posts: 211
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Hi! I've been chronically ill for almost 18 years now, but am just beginning to pursue the possibility of having a mast cell disorder.
Before I go into my history, can anyone tell me how to turn off all the flashing red things on the forum? I've been reading here for a while, but only when joining did I see everything light up. I get easily triggered into migraines with flashing things, and need to turn those off to be able to look at the subforums.
Thanks!
So, I was a very allergic child (we won't mention how long ago that was!), with lots of swelling and hives and rashes. As I grew older, I developed more hay fever like symptoms, and the other symptoms calmed down. When I moved from the Midwest to California in 1989, I was delighted to find that I no longer seemed to have hay fever or other obvious allergies.
In 1993, I moved with my husband and son into a rental house that was very moldy, and became extremely ill. That was the beginning of my long journey through what I call the ABCs, or the acronyms of an endless variety of diseases and syndromes. I was eventually found to have late stage neurological infections (Lyme, Bartonella, and Ehrlichea or TBDs) that came from tick bites. I've been under treatment now for almost six years, but as they were well established before being diagnosed, we don't know if they will ever be completely cleared, but treatment has helped.
However, part of my symptoms includes being extremely sensitive to all kinds of exposures and chemicals. We always called it multiple chemical sensitivity (MCS). About two years ago I had an exposure to paint stripper at my work, and my health has not recovered. My lungs felt like they were burnt, and I developed shortness of breath and tachycardia, even at rest. I have had reactions like this before, and eventually they get better, but this one never did.
So I started the diagnosis rounds again. They didn't think I had asthma, but the testing showed definite abnormalities. They finally decided I had exercise induced asthma, and put me on inhalers.
The chest pain did not improve, so I saw a cardiologist, who found I had a patent foramen ovale (PFO -hole in the heart.) With exertion, I was at grade 5 (the worst) for shunting blood from one side of the heart to the other. This could explain the shortness of breath, and I was sent to be evaluated for a patch. When I found the patch was made with nickel, I asked to wait and be re-evaluated, as I am highly reactive to nickel. I couldn't imagine having it implanted in my heart! The cardio doc agreed to re-evalute me in six month, and put me on blood thinners, because the PFO (you starting to see the ABCs here?) puts me at risk of stroke.
Because I am allergic to NSAIDS, we decided to try heparin injections. I tried the heparin, and several other options my primary came up with. All of them caused problems with my gut, with swelling of the GI tract, and eventually bleeding. Once stopping the meds, it would take time for the swelling to recede.
Finally, my re-evaluation for my heart issues was coming back up, and I was concerned. My shortness of breath was still very bad, and I was having swelling in my throat, enough that sometimes I had trouble swallowing. My chest ached all of the time, and sometimes I had knife-like pain in my back, through into the sternum area. My heart rate was running 100-120 even at rest, and any activity jumped it even higher. My hands and feet were swollen, and sometimes I couldn't get my shoes on. And I was TIRED. Really tired, all the time.
My primary doctor, who treats the infections, wanted me checked to see if anything else could be causing the chest pain. He is very concerned about my ability to tolerate a heart procedure, even if it was a catheter procedure, not open heart, and there is the nickel issue. So he had a physical therapist work with me, to see if it was anything structural. She told me she could feel my esophagus was twisted, and thought that was causing the chest pain. It had never occurred to me, but I was willing to see where it went.
After the session, which had been extremely gentle. I started to have increased pain. It had been a while since I had a physical adjustment, and I forgot I always tend to have increased pain afterward. In a few hours, I was in excruciating pain. My nervous system felt like it was on fire, and my skin was tender to the touch. I was also much more rashy that usual, with itching all over my body.
Finally, three days after the treatment, I was getting ready to go in to work, and suddenly my throat started swelling, even more than usual. My skin was itching like mad, and my heart started racing. I was having trouble breathing, and was having a hard time thinking. I took some Zyrtec, and used my inhaler, and called my doctor’s office. I must have sounded pretty bad, because they told me to go in to Urgent Care, ASAP. I was feeling a little better, and didn’t want to call an ambulance, so I went to the Urgent Care around the corner.
It took them a while to see me. By that time the worst symptoms had subsided, and I was just shaky and chilled, and still having a hard time thinking. They gave me a lecture (for going there instead of ER), told me to take Zyrtec every day, get an Epi-pen, and see my doctor.
When I got home, I started doing research. First I looked up the esophagus issues, which led me in several directions, including mast cell disorders. With that, it felt like a light went on!
All of my most bizarre symptoms seem to be here, and even make sense. All of my reactions to things normal people can’t smell, and aren’t bothered by. All my extreme sensitivity to everything. The exercise reactions, everything that doesn’t make sense to the doctors. Even the swelling in my belly when I breathe chemicals made sense here. So I decided to try the antihistamines, including Zantac. Was I shocked! So many symptoms improved! On Zrytec twice a day and Zantac 150 three to four times, my shortness of breath is gone, my chest pain is under control, my tachycardia is almost gone, my blood pressure is more stable, and even my long term, intractable constipation (supposedly cause by pain meds) is almost gone. I thought diarrhea was more mast cell like, but I found GI paralysis is also an effect of mast cell problems, and that is what the docs say is one of my gut problems. Until it stopped, I had no idea how much abdominal pain I was living with every day.
Wow! This story goes on and on, but I guess I have been sick a long time.
Last Friday I saw an allergist. I had been reading up, and was all set to fight to be tested for mast cell issues. I’m used to fighting, as it seems all my disorders are designer only. I never seem to have anything ordinary wrong with me. But to my surprise, when he had looked over my health history, and what had happened recently, the doctor began to explain to me about mast cell disorders, and how rare they are, but how he felt it should be looked at in my case. He is also going to test for carcinoid (?) and simple allergies as well. He didn’t give me a hard time about not stopping the antihistamines before the appointment, just said we would do blood tests.
Hallelujah!!
I don’t know for sure how knowledgeable he is, but I heard there is a mast cell specialist down at Stanford, which is a few hours drive from where I live.
The allergist did not have the test numbers in the office I was seeing him in, so is supposed to mail me the test requisitions. I plan to go to get them done as soon as I can. He told me to keep taking the meds I am currently taking, they should be OK for me. I am hoping they can find something to help with the skin issues I have, as those have not improved yet, but for now, I am not complaining.
OK, if you made it all the way through this, I do have a question. Though I wouldn’t wish my health issues on anyone, it does look to me as though most of you have more issues with anaphylaxis than I do. I have only had two episodes: One after taking bee pollen, years ago, that was very clear. That had rapid onset, whole body flushing (beet red and HOT all over), fainting, loss of blood pressure, and tachycardia. My husband was a physician, and did not take me to the hospital ( yeah, that is part of why he is no longer my husband), but I was OK afterward. This more recent event was not as extreme, maybe not even approaching anaphylaxis, though I understand it has a broader definition now.
Do many people with mast cell disorders NOT have anaphylaxis type reactions? My symptoms seem more just constant and relentless, but not so life threatening. It is true that I have my life very controlled now to avoid triggers, as I haven’t worked full time for many years. But I just wonder if you can have mast cell problems, and not shock?
I’m sure I will have more questions soon, but I want to thank everyone who shares so much information on this board. It makes a big difference to have a safe haven to come and share concerns that others cannot understand.
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