I have been itching to write this post, but at the same time, it feels like such a big announcement that I don’t even know where to start. I guess the easiest way is to just dive right in and start talking about it. The basics are that I got a diagnosis of a condition that appears to be the root cause of everything that has been going on. And on top of that, I have already started treatment for it and it appears to be working!
How It Started
I have to give huge credit to my therapist for setting me down this diagnostic path. She noticed that some of my symptoms were similar to another patient she was seeing and she recommended that I visit an allergist to talk about Mast Cell Activation Syndrome (MCAS). I had never heard of it before, but going to visit the allergist made sense to me because I normally have really bad allergies and it has been a while since I visited one. I have lived in Colorado, New York, and now Texas, and only Colorado really aggravated my allergies, but it seemed strange to me that they had just vanished. During all of the visits to other doctors over the last year or so, many had brought up allergies, but all I could say is that they haven’t been bothering me as far as I could tell.
It took a bit of research to find an allergist that specialized in MCAS because it is a very rare condition and most of the doctors’ websites didn’t mention it at all. A lot of them focus on the normal allergy tests and allergy treatments without much variation. The search was hard enough that I only found one doctor here in the very large city that I live in that mentioned MCAS and was covered by my insurance. I went ahead and set up the appointment and was shocked that they could see me the next week, especially after so many other doctors I had worked with were scheduling months out. In my mind, I was thinking that it just seemed too good to be true, so I was very skeptical that we would find anything new and I really didn’t think we would be finding something related to the overall health issue.
First Visit
The first visit changed my opinion right away. Everyone in the office was super friendly, asked a lot of questions, and really listened to what I had to say. In fact, they said my story was so interesting that pretty soon I had the doctor, the nurse practitioner, and the intern all in the room going over my history. MCAS is a very rare condition and it seems like the way people experience it can vary quite a bit. The doctor right away said that I do match a decent number of symptoms, but I would still be fairly atypical in how my body reacts to it. In fact, they said they could only think of one other person that was similar to me that they were treating, but even that person doesn’t have full-body reactions like mine.
After the whirlwind of questions, the doctor went over all of the labs they wanted to run and which of the allergy tests they wanted to run that day. She basically scheduled a bunch of tests related to other autoimmune diseases (most of which I had already run before), tests for a bunch of food allergies, and some very targeted tests that are specifically to build a profile of my body’s allergic response. I had done the allergy tests before, but that was back when they did the needle prick test across my back and then had to abort the test early because I was off the charts allergic. In Colorado, I was allergic to multiple things in each category and they rated me as the highest value for at least one in each of them, so I was not super excited about another allergy test.
The good news is that they have a newer test nowadays and it comes in a block that they kind of roll across your arms or back. The test uses a much smaller amount of the allergen and it wasn’t painful at all. The odd part was that it showed that I really wasn’t allergic to Texas that much. I think I matched three things out of the large number they tested for. And for the three, they weren’t even that high on the scale. The doctor said that with MCAS, it can be very hard to narrow down what the trigger is.
To my surprise, the doctor came back in at the end of the appointment and said that she had decided on a few things. The big one is that she was pretty sure that I had MCAS, so she wanted to put me on a few allergy pills and send in a prescription for an EpiPen. I was pretty surprised that she already had enough data to start treatment, but then she also said that she had some ideas about my triggers too. She said that with MCAS, there is a wide range of triggers and it could be more than one thing. From what I had told her already, she was fairly certain that at least a big part of my trigger was stress and exercise.
Allergic to Stress and Exercise
So wait, you can be allergic to stress? To exercise? The answer for me at least is yes. When she said that, I wasn’t totally convinced, but at this point, the rest of the blood work has come back so I can fill in the rest of the story. First off, starting on the allergy meds made an immediate difference. And not just a little change either. My hands and feet suddenly were not red and swollen. My body suddenly felt less tired and I felt like I had more energy. Things kept getting better because once the rest of the results came in, we found out that I did in fact have MCAS. It’s a bit too complicated for me to fully understand, but the short version is that my blood and urine results showed that I was having a high release of histamine and other chemicals even though I didn’t feel like I was having a normal allergic reaction.
I went to a few follow-ups as we talked about the results and ran my body through a few more tests. We can’t tell for sure that I don’t have any other triggers beyond stress and exercise, but at least those two gave us very clear results. With the blood work back, she started me on a monthly shot that will suppress my allergic response. I have been on the shot for half a week and I am feeling better than I have in a long time. It takes about 3 months of treatment to build up to the right level of suppression, so I have to be careful for a bit, but she said the frequency and level of my reactions should be greatly reduced.
It is really interesting looking back over my notes and my symptom logs that I was keeping now that I have this diagnosis. I can see a lot of examples where I felt good, so we went on a hike or went out shopping, and then the next day I would describe being in tons of pain and feeling like I was in a fight-or-flight mode. Now we know that my body was just sending out the wrong signals, which caused my body to ramp up my immune response when it wasn’t needed. I had shown the data to other doctors, but it didn’t help them get to what might be going on. I guess that just shows how rare MCAS is and how hard it is to diagnose.
What’s Next?
At this point, we are all done with testing and I am on the treatment plan for MCAS. So far, there have not been any side effects and I am feeling a lot better. I haven’t done much exercise yet because she wants me to let my body get used to the treatment before I push it too hard. After searching for a diagnosis for so long and suddenly getting one where I didn’t expect it is a strange feeling. Overall, I am just so relieved that we found what is probably the root cause of the whole thing. The only negative is that it is something that won’t go away, but the treatment is helping so much that I am not too worried about it. I do have to carry an EpiPen around with me, but even that is already starting to feel normal.
The last year has been really rough on me and things got pretty dark at times. This news has been sure a huge relief and I think I am still in shock about it. I am very grateful to my care team that has been helping me through this and helped me to keep pushing to find out what was going on. I am also very thankful for my wife for being amazing because I don’t think I could have made it through all of this without her.
Whew, that was a lot to cover and I am sure I missed a few things. I will be back to post more about how the treatment is going and what I am learning about MCAS as things progress.