Well, I have some news. I got in with the new allergist 2 weeks ago. She completely believed me about all of my symptoms, not blaming any of them on anxiety. She didn't waste time and immediately ordered comprehensive testing for MCAS (Mast Cell Activation Syndrome). She ordered several blood tests and a 24-hour urine collection. I don't have all of the results yet. But, the doctor called me herself on Friday afternoon when the blood work came in. She found multiple elevated levels of mast cell mediators in my blood. Clearcut evidence that I actually have this disease that I have suspected for four years. She said it was so conclusive that I don't even need to bother with the urine collection.
The best thing about this diagnosis is the validation that I am not imagining my symptoms or my progression, and that someone who knows what they're talking about has confirmed this. It is still a new diagnosis, so plenty of doctors are not yet even aware of it, much less able to recognize, test for, diagnose, or treat it. But it is such a relief after so many doctors have told me that my symptoms must be anxiety, or some sort of conditioned response (Thanks to my condescending allergist for that one). It's hard not to believe they're right after you've heard it multiple times. But I finally know that I am not imagining or catastrophizing any of my symptoms. When I am exposed to any type of trigger (environmental, medication, food, temperature, weather changes, vibration...anything my body decides is a trigger), my body goes through a cascade of symptoms due to the release of specific chemicals from my mast cells. My body believes it is being attacked, and responds as such. This condition is often progressive, as in my case. It is also notoriously difficult to treat, because so many potential treatments end up becoming triggers themselves.
So, that is the hard thing about the diagnosis. Everything that I have suspected is happening in my body is really happening. I knew I was suffering severely, and I have been mostly housebound for 6 months, and have had to avoid interactions with most people for quite a bit longer. This certainly explains why it is happening to me. The hard thing is figuring out how to stop the progression. I am lucky, because I do not experience anaphylaxis. It is now pretty confirmed that my reactions to cigarette smoke and running in high school and college were in fact anaphylactic reactions. Never asthma. Not "Vocal Cord Dysfunction." Which explains why the treatments never helped. But the EMTs giving me a shot of Epi always resolved the issue. I now have a prescription for an Epipen, because in my state, I could escalate to anaphylaxis at any time.
But let me tell you, even without throat closing anaphylaxis, my symptoms are becoming insane. Each reaction seems more severe than the last. I have a couple of recent examples of reactions that really demonstrate this:
About a month ago, I decided to try taking Pepcid. It is an H2 blocker, so it is helpful in treating MCAS. I suspected that I wasn't tolerating Zantac, so I discontinued that and tried the Pepcid. One 12-hour pill. My reaction included:
-Insomnia for 3 days
-Sensation of a fever, alternating between hot and cold, with no measurable fever
-Pounding heart for 3 days
-Full-body itching (pruritus)
-Nausea
-Diarrhea for 2 days (only able to eat white rice)
-Swollen face (edema)
-Burning face
-Burning throughout my torso
-Headache/facial pain
A week and a half ago, I tried a new H1 antihistamine my new allergist prescribed. It is a prescription called Cyproheptadine, and generally very well tolerated. I was still cautious, so I tried only 1/4 of the lowest dose. My reaction was almost identical to the Pepcid reaction, although the diarrhea and insomnia were more severe. I slept less than 30 minutes, despite heavy sedatives.
Then came yesterday. A hellish day I won't soon forget. I had to leave the house. I was overdue for a psychiatrist appointment. It was this office that made me miss the holidays last winter. But I had to go, because he prescribes my sleep medications. They are controlled, so no one can prescribe them without regular appointments. So, we had to leave for the office at 12:45, which is waaaaay too early for me to be leaving the house (sounds ridiculous, but true). There were also storms around, which really agitates my mast cells. I wore my respirator the entire time. Yes, a full respirator. Not just a mask. A ridiculous respirator. I did not smell anything through the respirator. Unfortunately, the reaction was insane. On the way home, my pain levels became very high, especially in my head and my sacrum. We got home, and all I could do was curl up in fetal position and moan. I crawled into bed and kept moaning. My mom came to check on me and noticed that I was hot. Really hot. I developed a fever that reached 101.5 by evening. (I have normally low body temperature, and normally do not get a fever with infection, so this was very notable for me.) So besides the fever, I experienced:
-Severe, widespread muscle and joint pain (especially sacrum) - Pain level 9
-Skin sensitivity
-Headache/Facial pain - Pain level 8
-Abdominal cramping
-Nausea
-Complete lack of appetite
-Tachycardia/Pounding heart (heart rate 100-120 for over 12 hours)
-Low blood pressure (90/60)
-Intermittent loss of consciousness
-Bladder pain
-Marked weakness (unable to lift my purse or my 7 lb. dog)
-Insomnia, because who could sleep through all of that?
Today, I woke up and still had a bit of fever, but it eased off as the day went on. We were pretty sure I was getting really sick, having contracted a flu or virus or maybe a urinary/kidney infection. But, if it were any of those things, I would still be sick tonight. And I'm mostly just back to my usual, crappy state. So, it was obviously a major mast cell reaction.
I feel completely traumatized by these reactions. I honestly don't know how I will make myself try another medicine or enter another building ever again. I am terrified at the amount of suffering I go through from such small things, and at the progression of my illness. The pain and fever are so difficult, because I cannot tolerate anything that might ease them. Anything!
A brief list of my medication intolerances:
Steroids
Sulfa antibiotics
Wellbutrin/Cymbalta--seemingly all SSRIs and SNRIs are out
Compazine/Reglan
Zofran
D.H.E.
Opiates
Nsaids--everything from Advil to Aleve to Toradol to Indomethacin
Prevacid
Nexium
Flexeril
Triptans--every migraine medicine
Tylenol
Sudafed
Xyzal
Vitamin B2
Most probiotics
Magnesium
Pepcid
Cyproheptadine
Cromolyn Sodium--at least the generic
So, in general, with MCAS, it is thought that when someone is reacting to most medications, they are not reacting to the medicine itself, but to one or more of the fillers/excipients/inactive ingredients. Most likely it is a commonly used ingredient. (Most medications contain between 10 and 20 of these extra ingredients...some even more.) Most doctors don't believe it is possible to react to such tiny traces of ingredients. But MCAS specialists see it all the time. And it certainly seems to be the case for me, since I can have the same exact set of symptoms from so many different medications. So, the next logical step seems to be to try to order compounded medication. It is special ordered through a pharmacy to contain no fillers, or only 1 safe filler when necessary. There are a few problems. One is that insurance companies don't cover compounded medication, even when medically necessary. The other is that most doctors won't even consider prescribing these medications. My new MCAS-savvy allergist doesn't seem to prescribe them. But I may have to convince her to try for me.
The other problem is that I could be reacting to one or more of my current medications, and that could be keeping me in a reactive state. It feels almost impossible to sort out which one is problematic though.
Another issue is that the only mast cell stabilizing medication approved by the FDA is Cromolyn Sodium. I have tried the generic. I did not benefit from it, and once I reached therapeutic doses, I seemed to be doing worse. (Although it's hard to say, because my condition has been progressing all this time.) I have heard of people that do poorly on the generic version, but the brand name version is very helpful. So that still may be worth a try. Again, my doctor would have to agree it's worth a try.
So far, I know that my blood contained elevated levels of Prostaglandins and Chromogranin A. Just these two chemicals explain so many of my symptoms: burning, increased pain perception, sleep dysfunction, joint and muscle pain, nerve pain, changes in heart rate and blood pressure, bronchoconstriction, etc. And mast cells release any combination of over 200 chemicals in any given reaction. Most of them cannot be tested for in a commercial lab yet. So, the array of symptoms this can cause is staggering. I will explain much more about this in my next blog post. (Hopefully, I'll get to it soon!) I plan on the next post being explanatory about MCAS, especially information I've learned in Dr. Afrin's book Never Bet Against Occam. I am still on a 2+ year wait list to see Dr. Afrin. He is leaving the University of Minnesota to start a mast cell clinic, so there will be a bit more of a delay than expected. But I am so relieved I have a local doctor to help me in the meantime. I am so lucky to belong to so many different FB support and awareness groups that have helped me to locate this doctor and learn that I am not a freak. I am one of them. I am extremely isolated, but I am not the only one going through this insanity. In fact, Dr. Afrin believes it is an epidemic. I learned that with EDS and POTS, along with my progressing chemical reactivity, MCAS was the natural explanation. They are genetically linked. I hope to get the explanatory post up soon. In the mean time, for anyone curious, the blog mastattack.org is an excellent resource written by a medical researcher.
In particular, this post explains the connection between EDS, POTS, and MCAS really well:
http://www.mastattack.org/2017/06/mastattack-107-laypersons-guide-understanding-mast-cell-diseases-part-32/
Also, this post is amazing:
http://www.mastattack.org/2016/04/the-devils-arithmetic/
For a simplified version, I really like this blog:
https://hellsbellsandmastcells.com
Especially this post:
https://hellsbellsandmastcells.com/2017/05/11/4-facts-you-should-know-about-mcas/
I am incredibly lucky to have a core support group that are helping me to maintain my bubble-like existence, protecting me from triggers whenever possible. These are the people that are forced to live with me: my husband some of the time, and my mom and stepdad the rest of the time. I would absolutely not be here without them and their support. They have believed in me long before this diagnosis. And I can never thank them enough for it, because I know it sounds crazy that I have another rarely heard of diagnosis. It is crazy. But it's probably not that crazy, because it's possible that the mast cell activation has been responsible for every symptom and diagnosis in my lifetime. Nonetheless, I could not survive this without their help and endless accommodations. And....I'm crying now, out of gratitude with a hint of despair.
Thanks for reading. I'm hopefully going to go sleep now, since I barely slept through my fever last night.
