Mast Cell Activation Syndrome (MCAS) - discussion thread

I sometimes get only one red/blue/purple and swollen foot or hand. They can become very painful to walk on due to the swelling. I’m assuming >23 hrs of bedrest isn’t helping. And it’s nothing like an allergic reaction, it’s blood pooling. If I press on the skin, it takes many seconds before the white mark disappears.

 

It is confusing and I do not think we have the right idea due to lack of searching finding and research. I have kept Angus or his been kept away from antihistamines but we need to look at those that have not and have had good results or not so good and make a distinction. There are natural foods and other things you can take that help with the histamine degrading which helo with the problem with foods. Sadly from now until summer Angus will have all the normal symptoms of allergies and it is a heavy burden and impacts on his POTS/OI.

 

Yes they have, to my knowledge there is one place in the UK who follow the correct procedure. Does this help though?

I think before we have trials we need to understand the subgroup where skin, pain and eating is a problem and find which part of the PEM cycle it occurs in because hormones play a part in this and we are not seeing the whole picture. If it is a matter of the warring sign that the body is fighting or adjusting, then we need to find the clues on when and how otherwise we are just throwing darts at a board and missing the mark. Maybe health passports would help or the GPs red flag system for reasonable adjustments? we need to see the pattern and then look at the possibilities.

The immediate problem is safeguarding those who are told they are anxious and really do need treatment for Mast Cell. We need coroners to be aware and on the look out and to make sure that ME and Mast Cell is reported if they are found on the death certificates. Having just one or the other on the death certificate is not acceptable because it gives the wrong data. This fight parents have of explaining, hoping and then loosing their child because no one will open up, clouds out understanding and we need proper investigations? Imagine going through decades fighting to find out you were right and then things are not written as they should be. It takes a core strength to live with and fight this after your child has died.

 

Well most of those would look for Mast Cell type reaction with many who can define in individual patients what is needed. Binita Kane has done videos a good video looking at the experience of patients

https://www.youtube.com/watch?v=dgEciTMFsYc

We have to look and be open to this because it is a very big issue as described in the video I have posted and we need GPs to have this type of knowledge

 

And this demonstrates the problem. The 'most of those' you mention will believe anything and everything at the same time. The fact that if you mention mast cells they will go off on a tangent about mast cells does not alter the fact that they describe people with severe ME/CFS as having cold hands with poor circulation rather than inflammation.

The video might as well be talking about UFOs. MCAS must exist even if the tests are uninterpretable. Just like UFOs must exist even if the photos are uninterpretable. As Hutan says, we need to see videos like this for what they are - empty of any meaningful evidence.

Nobody here has a closed mind about this. We just do not want people with ME/CFS led up the garden path by doctors who make things up and sell them to people with no evidence.

 

Staining for mast cells is a joke. Most tissues are stuffed full of mast cells. With ordinary stains you don't notice them but even with something simple like toluidine blue they show up plastered all over everywhere, but with huge variation density in normal tissue. Counting mast cells is an idiot's game. (I spent much of my MD project staining tissue sections with toluidine blue for other reasons.)

Apart from which Had never heard that MCAS was associated with more mast cells. This is the typical UFO type argument - if one piece of evidence is in doubt you just invent another even if it doesn't make sense with the first.

 

The index case in Afrin's book was a patient with polycythaemia but who didn't have the genetic markers usually associated with polycythaemia vera. He considers mastocytosis and phaeochromocytoma, but neither seems to fit; he finds the reports of "monoclonal mast cell activation syndrome" in the literature. The GI tract appears normal; he comes to rely on GI biopsies stained for CD117 (usually performed to identify gastrointestinal stromal tumours I think) & counting the mast cells in a high-powered field. On the basis of apparently high numbers in an HPF he prescribes imatinib.

And that's how it all got started. The subsequent patients he describes are very heterogeneous. Some probably had rare haematological disorders - one was diagnosed as having pure red-cell aplasia - for others, he over-extrapolates from fatigue and pain and allergy and a few findings or test results that don't mean much in isolation and tries to shoehorn them into his preferred narrative.

 

After a long time of not having much sign of mcas, I apparently now have a pretty bad histamine intolerance. I get red rashes and itchy welts, I have sores on my face, and my digestion goes to absolute heck if I eat high-histamine foods. It's an extremely unwelcome development on the food side of things because I already had fodmap issues, and my diet has become extremely restricted.

I have one theory on the origins of it, which is that i had a vasectomy not too long ago; apparently this can cause autoimmunity sometimes (the result of the severing of the tube is that gametes are floating around inside your body where they're not usually found). I don't really want to get the operation reversed, but if things get worse I might investigat that. The timing might just be coincidental too. Could just be age+me/cfs dealing me an unlucky hand !