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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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MCAS and vascular issues

ebethc

Senior Member
Messages
1,901
what kind of vascular issues does MCAS cause? I feel like I"m walking through molasses when it's humid... My sinuses swell up, I feel like I'm holding on to so much water... my joints kill me, I feel bloated.. my eyes are itchy.. I've noticed this other times, too, but humidity is a biggie...
 

keenly

Senior Member
Messages
814
Location
UK
what kind of vascular issues does MCAS cause? I feel like I"m walking through molasses when it's humid... My sinuses swell up, I feel like I'm holding on to so much water... my joints kill me, I feel bloated.. my eyes are itchy.. I've noticed this other times, too, but humidity is a biggie...

My blood vessels swell in legs. I get fluid around knees. It is very visible. I am sure this is due to mast cell issues, causing a chemically induced allergic vascullitis.

It is like my vessels are chronically dilated, which I believe histamine can do.

Mast cells are an area that needs more research, I am sure they play a HUGE part in ME/CFS/POTS.
 

btdt

Senior Member
Messages
161
Location
Ontario
@ebethc
@keenly
I don't have a mcas diagnosis it was suggested to me by another person on this site... i have not read the suggested book or bought it yet. I am trying to work my way thru a lot of information to sort out what my next best step is... and it may take some time considering the amount of varied information I need to sort and my lack of cognitive resources.
All that said I cannot function in humid weather I can't. Migraines cognitive funk reactions to chemicals had me locked in one room most of last summer. I had an mri years ago at the bottom of the page it was suggested vasculitis could account for the findings and further testing was recommended...no further testing was done.

I am curious if previous posted have had similar results on brain mri? have you found successful treatment diagnosis since your posts?

I have a long history with me cfs fibro mcs so far.

Are these prior dx part of your experience?
 

btdt

Senior Member
Messages
161
Location
Ontario
PS
My MRI testing was ordered by a neurologist google suggests a different specialist
"
Management[10]
This is concerned mainly with symptom control, as there is currently no cure. Systemic mastocytosis is usually managed by haematologists."
https://patient.info/doctor/mastocytosis-and-mast-cell-disorders

I am not sure if this sort of doctor would be best to dx mcas or not?

Who here has been dx and what type of doctor manages your illness.
 

ebethc

Senior Member
Messages
1,901
@ebethc
@keenly
I don't have a mcas diagnosis it was suggested to me by another person on this site... i have not read the suggested book or bought it yet. I am trying to work my way thru a lot of information to sort out what my next best step is... and it may take some time considering the amount of varied information I need to sort and my lack of cognitive resources.
All that said I cannot function in humid weather I can't. Migraines cognitive funk reactions to chemicals had me locked in one room most of last summer. I had an mri years ago at the bottom of the page it was suggested vasculitis could account for the findings and further testing was recommended...no further testing was done.

I am curious if previous posted have had similar results on brain mri? have you found successful treatment diagnosis since your posts?

I have a long history with me cfs fibro mcs so far.

Are these prior dx part of your experience?

What is vasculitis?

Humidity and particulate matter are the bane of my life