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Mysterious shortness of breath: What has helped you?
Lung Health | Last Active: Oct 23 10:20am | Replies (3405)Comment receiving replies
@isnotanxiety I was wondering how you and @gabrielm, who started this thread, were doing. I started a new thread under lung health about a possible underlying cause of shortness of breath, air hunger, yawning, etc mentioned in a post by @yaramathe. Basically doctors and scientists in a new-to-me field of medicine called functional medicine are looking for underlying root causes of diseases. They are finding that MAST cells running amok, that don't show up on regular medical tests, cause diseases in every system in the body. The symptoms they identified as MAST attacking the respiratory system are shortness of breath, yawning, air hunger, coughing, etc. I hope you will read the post - https://connect.mayoclinic.org/discussion/possible-root-cause-for-sob-air-hunger-difficulty-deep-breathing/ to see if this might be relevant to your condition. It was a real AHA moment for me to learn about this in terms of thinking about a lot of seemingly unrelated medical issues I've had in the past 74 years. MAST attacks come and go and negatively impact different systems in our bodies at different times. I hope the new medication helps! Nancy
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@nla4625- I've done a bit of research into Mast Cell Activation Syndrome (MCAS). Since I am not a scientist nor a doctor I have to break the science down in simpler terms than what I read. I google a lot! What I gather about MCAS is that it is mostly an allergic reaction to something or many things. (although this is currently being debated). The tests that you mention are urine tests to determining whether the symptoms occur in separate attacks and are typical symptoms of an anaphylactic reaction without a clear cause. Or if they are repeated reactions.
The problem with this syndrome is that after a positive diagnosis the results may not pinpoint the triggers that activate these cells to cause symptoms. There are thousands and thousands of allergies, many of which don't have a particular trigger or solution. Also, there is not a "one treatment fits all" for this.
MCAS is also a multi-system disease:
https://www.centerformultisystemdisease.com/services/mast-cell-activation-syndrome
https://www.aaaai.org/conditions-and-treatments/related-conditions/mcas
My shortness of breath is due to lung cancer and damage to and loss of lung tissue from cancer itself and treatments. I also feel SOB when I exert myself beyond what I should. But, hey, why not try? lol. I also love the deep cleansing breaths when they come!
It makes sense that SOB can be an allergic reaction, even to our own bodies. I think that since it's so hard to pinpoint causes for this means that not everyone responds to the same treatments. A lot of times, as we can see in this group, it's a trial by error.
MCAS is definitely much more complex than what I have described. A scientist might shake his head at my post and tell me to go back to gardening or painting. Does any of this make sense? Did I miss it completely?