Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Hi! New to PR - MCAS advice???

Discussion in 'Mast Cell Disorders/Mastocytosis' started by richymcp, Sep 7, 2018.

  1. richymcp



    I was wondering if I could get some advice on MCAS - primarily if I could be suffering from it?

    I’m 48 years old male and was diagnosed with ME/CFS in 2016, I also suffered from a similar illness back in 2006. That time it lasted approximately 12 months then miraculously disappeared only to return in early 2016.

    I’ve had quite a few medical investigations - so far nothing has come up apart from high cholesterol and some fat in my liver. I also had some raised liver enzymes which I was told related to alcohol even though I hardly drink.

    My illness is quite sporadic. I have periods of good health then seem to suffer crashes and end up extremely sick and unwell.

    My symptoms are quite varied but here is a rundown >

    Primary symptoms >>>>>>>>>>>>>>>>>>>>>>>>

    Extreme tiredness - fatigue

    Nausea - constantly feeling sick

    Diarrhoea – often during periods of illness and can happen soon after eating

    Brain Fog - at times I find it hard to concentrate on anything, reading a page of text would be a struggle!

    Other symptoms >>>>>>>>>>>>>>>>>>>>>>>>

    Night disturbances - although I fall to sleep relatively easily I generally wake around 2am feeling hot I then find it hard to get back to sleep

    Pins and needles - often tingling in legs or facial spasms

    Increased hunger / thirst - I often seem to crave food as if my blood sugar is low (it isn’t!)

    Alcohol intolerance - I seem to have developed an intolerance to alcohol. I get drunk extremely easily and alcohol makes my night disturbances much worse

    Sinusitis- I sometimes have attacks of sneezing and a runny nose, I also have serious problems when the tree pollen comes out

    Headaches - I get tension headaches quite often during the periods that I’m feeling sick

    Hoarse voice - I’ve noticed that occasionally my voice is quite hoarse although I don’t seem to have a sore throat or throat infection – I wonder if this is related to excess stomach acid?

    Mood changes - I seem to be more temperamental than usual, sometimes feel very anxious, sometimes feel depressed

    Hypersalivation – this can happen from time to time, it’s very odd

    Rash – I’m not sure if this is relevant or not but I have permanent rash on the back of my ankle (it’s been there for years) its sometimes quite inflamed and itchy. I also sometimes get a bit of flushing around my upper torso and face after eating and always after drinking alcohol.


    I only came across Mastocytosis a week or so ago and I’m not sure if it’s worth going to see someone about it?

    I’d probably have to go private (as my Dr is completely useless) I’m happy to do that but only if it’s a reasonable possibility.

    Any advice would be greatly appreciated!


  2. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Hi, yeah see private doctors if necessarily. You really need to doctor hunt about. Raised liver enzymes are not uncommon in ME/CFS. I dont think you'd be drinking much if you have alcohol intollerance!

    See a skin specialist if you have to re that rash. Ive found general doctors quite clueless when it came to many of my rashes and Im sure a darier's sign (something which occurs in Mastocytosis) was missed being diagnosed due to that.

    I went to 2 different doctors for one rash, one admitted he didnt know what it was but didnt refer me to a specialist which the other doctor kept saying it was a blistered rash due to sunburn when I wasnt even sunburnt and hadnt been out in the sun!! That rash if I had seen a skin specialist when i had it may of helped to have got a mast cell disorder diagnoses.

    That could indicate a B12 deficiency so it may be a good idea to trial a good B12 supplement when you are next getting these symptoms.

    With that symptom of increased thirst.. I suggest to make sure you have some testing even if you only do a poor mans POTS test on yourself at home for POTS (all you need to test for that to borrow a BP monitor to do a 10min test, look up how to do this properly. Make sure you have a stable laying reading before the stand part of test) . POTS =postural orthostatic tachycardia syndrome

    The increased thirst could be being caused by low blood volume happening which goes with POTS which often can coexist with ME/CFS. Though that possibility is less likely in you then some as you havent mentioned issues with standing or heat which usually occur with it.

See more popular forum discussions.

Share This Page