1. Community
  2. Skin and nails
  3. Mastocytosis and Mast Cell Disorders

Two specific MCAS Questions, please!

Posted , 2 users are following.

Tracer
Tracer

I have two specific questions please:

1.  Breathlessness & MCAS.

2.  Orthostatic HyPERtension & MCAS

?1.  The lists of symptoms always just say 'breathlessness', please could anyone tell me how this manifests in their case - e.g. is it all the time or only on exertion, like walking?  Do you get just plain breathless (eg mouth breathing) or is it only associated with wheezing?  Does your HR rise as your breathlessness does?

?2.  I have orthostatic hyPERtension (OHT) (i.e.) my BP is normal (or even low) when I'm lying or seated but rises significantly when I stand up - OHT is listed under articles talking about differential diagnoses to other conditions which can have this (such as, pheochromocytoma) and yet I can only really see low or high BP mentioned in MCAS articles.  Do other people experience this?  Is it considered a 'telling' symptom amongst MCAS patients and specialists?

?Sorry for the length of all this but I'd be so grateful for any responses, thank you!

0 likes, 4 replies

4 Replies

  • jo88751
    jo88751 Tracer

    Posted

    Hi there, have you joined the ‘mast movement’ Facebook group. There is a lot of useful info on there. I get breathless frequently, I also have the hyperadrenergic pots type symptoms that you are describing. There’s  a lot of us with MCAD that have similar symptoms. Lots of awful and odd symptoms.  My name is Jo Reid if you wanted to private message me on Facebook with any questions smile
    • jo88751
      jo88751

      Posted

      I just re read your message. Yes my heart rate rises and my bp during a flare and also chronically. The breathlessness is not usually due to exertion but part of the reactions to food/chemicals etc. Do you have an Immunologist that is familiar with MCAD? 
    • Tracer
      Tracer jo88751

      Posted

      Hi Jo,

      ​Yes, thanks I have joined that and other relevant groups and am finding them useful.  I will PM you, thanks!!

    • Tracer
      Tracer jo88751

      Posted

      Hi again - I can't find you on Mast Movement to PM...?

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.