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TOPIC: MCS as Mast Cell Activation Disorder

Mast Cell Activation Disorder as cause of MCS 4 years 9 months ago #7

  • Jodie
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Thanks so much for that Bruce - it's given me (and I'm sure anyone else who's interested ) plenty to think about. I'm always amazed at how you (and Maff) can deal with all this hard science at the same time as your brain feels like a block of concrete - "brain fog" never seems an adequate term to me .
Apologies for the gremlins (again) *sigh* .. hope the sign in works from now on in, if you have any probs email me.
Good luck with getting the disability payments - that's a whole other area I'd like to start a thread on - it seems to me ppl get kicked when they're down with this illness. I know folks with cancer who were treated brilliantly in every way, recover, then get MCS & are treated like lepers & outcasts by everyone including their family - its truly shocking. But we are gaining ground & making fast progress - I really believe that .. ! xJ
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Mast Cell Activation Disorder as cause of MCS 4 years 9 months ago #8

Hello there, I always say this - but does anybody believeit? Mast cell activation is not "cause" of MCS. Mast cells are activated as part of the overall inflammatory response. To separate one thing out can easily become misleading - like a cow chasing its tail. It becomes a "nothing but" explanation or interpretation.
When the airway is altered - nerves are exposed and neurotransmission signals the hyperinflammation - which includes mast cells.
I don't get encyclopedic beyond that because I don't see the purpose in doing that. Focusing on all of these secondary aspects individually doesn't address the whole...although I suppose there may be a few individuals somewhere who have a peculiar difficulty concerning mast cells where it would be primary - but in the majority I don't think it is. Mike
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Mast Cell Activation Disorder as cause of MCS 4 years 9 months ago #9

  • BruceHart2
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Hi, Mike. People seem to keep assuming that I'm saying MCAD is definitely the only cause of MCS. I never mean to imply this, and even explicitly stated otherwise many times. I just say that MCAD often manifests to fit the definition of MCS, thus by definition it's "MCS". I think the term idiopathic environmental intolerances (IEI) is more accurate than MCS. And MCAD can be a more specific diagnosis than IEI (MCAD is less idiopathic).

It's common to come across statements of MCAD being rare, but MCAS, a recently recognized type of MCAD, is recently believed common by some top MCAD researchers with "recent preliminary prevalence estimates of 14-17%".[1] I worry that people prematurely calling conditions rare can be kind of a self-fulfilling prophecy where a common condition is rarely diagnosed due to doctors not wanting to learn about a "rare" condition they'll never encounter, and patients thinking they don't have it because it's "so rare". They should use something like "obscure", "emerging" or "newly recognized", not "rare", until they know it's truly rare.

It sounds like you're describing neurogenic inflammation. If the root or primary defect was with the neurons and they then activated normal mast cells then that would be secondary MCAD. However, I suspect defective mast cells may be activated by normal neurons as well, which in that case even though the stimulus comes from neurons, it's still a primary MCAD. Neurogenic inflammation is something I'm interested in researching eventually.

From what little I've read it seems another possible cause of MCS may be basophil activation disorders. Basophils are very similar to mast cells. Although mast cells communicate with other immune cells and I'm not sure if those basophils are hyper-reactive due to a primary basophil defect or because defective mast cells primed them. Maybe they're both defective sharing some of the same mutations. I don't know yet. There's still a lot I need to learn.

"Perfume induces a dose-dependent non-IgE-mediated release of histamine from human peripheral blood basophils. Increased basophil reactivity to perfume was found in patients with respiratory symptoms related to perfume."
www.ncbi.nlm.nih.gov/pubmed/17877753

"...basophil activation can lead to severe symptoms mimicking MC activation or even MCAS."
link.springer.com/article/10.1007/s40521...0021-1/fulltext.html

"It is also possible that some idiopathic events follow basophil activation rather than mast cell activation, or result from activation of both mast cells and basophils. Selective activation of basophils may be explained by the differential expression of critical cell surface receptors on basophils and mast cells. In fact, some triggers of mediator release may preferentially activate basophils."
www.ncbi.nlm.nih.gov/pmc/articles/PMC3753019/

Regardless of anyone's favorite MCS hypothesis, promoting awareness of MCAD will help everyone with MCS because it will be the quickest way to convince the world MCS is real.

[1] www.allergysa.org/journals/August2014/ThePresentation.pdf
Last Edit: 4 years 9 months ago by BruceHart2.
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Mast Cell Activation Disorder as cause of MCS 4 years 9 months ago #10

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I remember wanting to put "possible cause of MCS " in the title but there was't enough space :)
I agree Mike, I think it's a given that this stuff is not simple, biology is mindblowingly complex.   But the fact that there's mast cell involvement for many with MCS (certain antihistamines, mast cell stabilisers etc work for them) could now bring them under the umbrella of MCAD/S which means they have specialist support as needed, possibly disability support & an end to ppl telling them they're crazy & that they should be locked up.  It is not the end of the story obviously, research is ongoing , but with that diagnosis at least they are taken seriously.   My specialist asked me to keep in touch as research in this area is moving so fast, which suggests there will be more info coming out soon and therefore new ways of approaching / understanding this, maybe new treatments.  In the meantime I'm now taken as seriously as someone with, say, diabetes.  It makes life A LOT easier when dealing with certain individuals - medics or otherwise.  
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Mast Cell Activation Disorder as cause of MCS 4 years 2 months ago #11

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Quite a good, simple write-up for newbies

naturalnutmeg.com/when-food-sensitivitie...ast-cell-connection/

and a brilliantly informative blog

www.mastattack.org/what-is-mcad/
Last Edit: 4 years 4 weeks ago by Jodie.
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Mast Cell Activation Disorder as cause of MCS 4 years 1 month ago #12

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Anyone who wants to keep up with research on MCAD/S could check the research group on Facebook-

www.facebook.com/groups/1489732487968980/

Also this group is extremely busy, www.facebook.com/groups/486532874778463/ .. if a little depressing - so many people struggling with this and not enough specialists - gotta think something is horribly wrong with our environment to make so many of us so sick with what appears to be an newly emerging disease.
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