Diagnosing Mast Cell Activation Syndrome (MCAS) – More Questions and Answers (Post 3 of 4 in series)

 
As a follow-up to my first and second posts about Diagnosing Mast Cell Activation Syndrome (MCAS), below are the additional questions that I asked and also emailed to Dr. Afrin & his responses. Questions and answers are posted with permission from Dr. Afrin: 
1. Is MCAS/MCAD linked to cardiac issues like Atrial Fibrillation and aneurysm? Or, is it possible? (I asked this one because of my own family history, as well as questions I’ve received from people personally and to the EDNF helpline).
“Yes.”
2. Theoretically, is it possible for MCAS symptoms to get so out of control that the body can literally spiral downward pretty fast? I’m thinking specifically of those with EDS. There seems to be this downward spiral that happens fairly fast and I can’t help but wonder if inflammation from MCAS could potentially play just as much of a roll as someone just laying in bed constantly and I would think the combo is fairly devastating. Deconditioning seems to happen fairly fast and is a huge contributor in the severity of symptoms of those with EDS. Many also have MCAS or whichever the main underlying condition is.
“Yes.”
3. Any thoughts on why I got worse suddenly? Flu shot? Stress? Both?
“Those are possible reasons.”
4. Thoughts on future vaccines for me, or if needed for work? (I.e. Flu shot again or something else)
“Past performance usually — but not always — predicts future performance. If it’s a shot you have tolerated before, then you’ll likely tolerate it again, but there of course can never be a guarantee. On the other hand, a flu infection can be fatal (whether one has MCAS or not).”
 

 
 
5. Based on my symptoms and reaction to the flu shot last year, as well as the MCAS symptoms of my own kids (they have done ok so far with vaccines, at least I think), do I have reason to be concerned about the flu shot or vaccines for them in the future? I guess I’m specifically talking about the flu shot.
“Past performance usually predicts future performance. If you have had a serious adverse reaction to a flu shot, then you should not get the same kind of flu shot again. The reactivities of one affected member of an MCAS kindred do not necessarily predict the reactivities of other affected members of an MCAS kindred. Again, flu can kill. If a patient is not previously known to be intolerant of vaccinations and has no other contraindication to vaccinations (for example, chronic immunosuppressive therapy), then I have no basis for saying anything other than that standard vaccinations should be given.” 

6. Is MCAS associated with the amount of cerebral spinal fluid in someone’s head? I would think that inflammation of the brain could be linked to excess fluid, especially if it cannot drain easily. The amount of fluid in the brain also seems to be linked to the pressure and discomfort felt while flying. The pressure builds so much that if I don’t plug my nose and blow to pop my ears, it feels like I’m going to rupture an ear drum or even a vein in my neck. The pressure in my neck is incredible. It’s not on the cervical spine, but in the veins near the lymph nodes. Sometimes I can feel a bit of a pop, but other times it’s intense pressure along with sharp pain that comes and goes. When I release the pressure in my ears, it also releases the pressure in my neck. I ask about this because I know that I have excess cerebral spinal fluid in my head that doesn’t drain. I opted to not have surgery for a shunt, and meds for swelling on the brain didn’t seem to make a difference. I feel that the pressure and fluid is directly linked
to mast cell symptoms. I.e. if reaction symptoms are low, swelling and pressure in head is low.
“Unknown.”

 
7. If Mast cells are linked to all psychiatric conditions, what are chances of someone developing a severe one?
“Unknown.”
8. Based on my symptoms and history with certain things, especially after the flu shot and even Bikram yoga, have I had some level of anaphylaxis? (I wanted confirmation, even though I knew that I probably had – see my typical reactions above).
“Sounds like it.”
9. Thoughts on if MCAS is linked to CFS (Chronic Fatigue Syndrome) and Fibromyalgia? I’ve read yes, but wanted to hear your thoughts. They seem to go hand in hand for me personally
“I suspect MCAS is what’s at the root of the problem in large fractions of the CFS and fibromyalgia populations. That said, suspicions aren’t good enough, rigorous research needs to be done, but the research to prove or disprove such a notion has not been done yet and it would probably take about half a million bucks to do a high-quality study of such in each such population. I could add a couple hundred other populations, too, in which I suspect the problem is rooted in MCAS.”

10. The human seminal protein allergy (HSPA – AKA allergy to semen), as well as other gyn & bladder issues like Interstitial Cystitis (IC) that have been linked to mast cell issues, theoretically, would these issues improve when after finding the right therapy?
“Theoretically yes.” 
11. If I do have thrombosis at some point, and have homocysteine levels checked and they are found to be on the higher side, is there any connection to MCAS/MCAD that you are aware of (asking based on known CBS gene mutation)?
“Unknown.”
12. Why do some people with MCAS have higher RBCs? Or, does having RBCs cause a problem that can trigger MCAS? I noticed that my lab results on my chart showed pretty much normal level of everything, including RBCs.
“Unknown. I have my theories, but research is needed.”
13.  If my biopsies (or biopsy) comes back with mast cell infiltration, is the next step a bmb? Or, are there other factors that are considered in deciding if that is necessary or not?
“I have long been of the opinion that marrow biopsy is only needed if tryptase is persistently above 20 ng/ml or there are other clinical hints (not present in your case) that systemic mastocytosis is a possibility.”
14.  Do people with MCAS have positive biopsies, but not positive for Mastocytosis?
“Some do, some don’t.”
15. Connection between me having Hashimoto’s Thyroiditis (or developing it at 21yo) and MCAS? Other endocrine problems? (I’m assuming yes, but research funding is needed to prove it)
“Mast cell disease can lead to any autoimmune disease, including Hashimoto’s. It also can lead to a wide variety of endocrine problems.”
16. Since so many women have pelvic conditions that are associated with MCAS (and even EDS), and many pelvic conditions also have a higher risk for certain female cancers (ie. adenomyosis and even chronic UTIs has been linked to bladder cancer, etc.), it would seem that there’s possibly some overlap genetically? Has any of this ever been studied?
“No.”
17. I am reacting to things daily, as I mentioned when I saw you. Sometimes, I can figure it out and sometimes it’s random, which I know is normal. Last month, I had a complete reaction to the med I took for strep, even though I’ve taken it several times before. Now, I seem to be reacting to both Adderall and Opana, when I haven’t before. Both have been 2 of the meds that I’ve been able to take without problems for the most part. However, it’s different now. Should I try to switch to something else? Or, will I just risk my body reacting to anything at this point? How much does a cyp2d6 pathway issue affect my reactions to meds? I know adderall goes through this pathway and Dr. Pocinki and I have agreed to keep my dose fairly low, until I can see if it’s building up in my system through a test. Adrenal seems to help me the most out of the med in this category that I’ve tried, but I guess it’s now doing the opposite. I am very interested to hear if you have any thoughts on this, especially if the pathway issue is what could be triggering it or adding to the flare.
“As I’ve previously told you multiple times, I think you need a diagnosis. I’m not going to make any recommendations beyond antihistamines until you have a diagnosis.”
 

 
 
18. Will the whooshing/white noise in my ears ever stop? This doesn’t ever seem to go away. It just gets worse with either tinnitus and hearing fading in and out in one ear.
“I can’t predict what will get better (and to what degree) or not.”
19. One thing I always remember was an MRI of my abdomen or pelvic region that was negative, but did note evidence of fatty infiltration of my liver; however, I hardly drink. Assuming this is linked to MCAS?
“Presuming we find MCAS in you, it’s possible.”
20. Are you willing to answer patient questions?
“My answer to your first question is as you could probably guess: it depends. There are some questions I can answer and am willing to answer, some questions I can answer but am not willing to answer, and some questions I cannot answer.”
21. Genetic link between Alzheimer’s and Amyloidosis and Mast Cell Disease?
“The latest research in neurogenetics suggests there are many genes linked to Alzheimer’s. I have no idea what test you are talking about. Tell me what gene you think is linked to Alzheimer’s, and I will tell you whether I know of any linkage of that gene to mast cell disease.”
“It is interesting that at least one drug (masitinib) that has been in testing for nearly a decade for mastocytosis, and is showing promise in that area, is also being tested in Alzheimer’s and is showing promise in that area, too.”
Additional resources and links:
– Anaphylaxis Emergency Information
– About Mast Cell Activation Disorders (Mast Attack website)
– Link to 1st post about visit to see Dr. Afrin
– Link to 2nd post about visit with a typical reaction for me
– Publication by Dr. Afrin – Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options
– University of Minnesota’s Blog with MCAS patient success story
– Dr. Afrin’s contact information in Minnesota
– EDNF Learning Conference Slides by Dr. Maitland
– EDS Awareness webinar recording by Dr.Maitland
– EDS Awareness webinar recording by Dr. Theo
– The Mastocytosis Society
– Dr. Theo’s website with various publications on mast cell activation disorders & relation to various other conditions, such as autism, interstitial cystitis, fibromyalgia and more. www.mastcellmaster.com.
– If interested in an integrative health and wellness conference, that discuss chronic conditions such as Mast Cell Activation Disorders and Ehlers-Danlos Syndrome, join us at Wellapalooza!
Edits by Justine Case – wonderful friend, incredible writer, fellow EDNF HelpLine volunteer, and EDSers with MCAS.
DISCLAIMER: The information if for information purposes only. The above information and statements should NOT be construed as an endorsement for a physician mentioned on this website or in this post. You MUST do your own due diligence. This site accepts no liability WHATSOEVER if you consult any of the physicians named or those who I’ve personally seen, or medical care (or lack there of) in the event of a true medical emergency like anaphylaxis. Always seek the care of a physician concerning your health or any questions you have. If you have questions about anaphylaxis, go to: http://www.aaaai.org/conditions-and-treatments/allergies/anaphylaxis.aspx. This website and the four-post series is for your information ONLY. This information should not be viewed as a directive or as complete medical facts. You are responsible for your own health and well-being, as well as to do your own medical research. Please read additional information here.