Possible Mast Cell Activation Disorder

Hi amy, direct your doctor towards these two papers 

mast cell activation disease, (mcad) a concise practical guide, by GJ Molderings, published in the journal of haematology and oncology, available on line.

the other paper is a document by dr afrin titled presentation diagnosis and management of mast cell activation syndromes, published by NOVA, unfortunately you can only view this online.

this is an encyclopaedia of all the strange symptoms that he has come across in his then 300 patient population. 

i self diagnosed my self ... I had all sorts of constantly changing symptoms all described in dr Afrins paper. Many doctors, when they see lots of symptoms start to think of lots of causes and may tell you that you could have a whole range of things given the range of symptoms. I had an enormous battle with a haematologist and a neurologist who took this approach. Eventually I saw a prof Conway at UCLH who took the view that there were only three things that could cause such multi system symptoms, endocrine, neurological or mastocytosis. He discounted the first two and mastocytosis , then with the help of the papers I found on the internet on mcad agreed to prescribe me mast cell stabisers that have helped a lot.

there are tests for mastocytosis but not mcad on the nhs. The current diagnostic criteria for mcad is to have suspicios symptoms and show evidence of mast cell mediator release. This is commonly done with 24 hour urine tests for n methyl histamine. There are some private doctors who I believe do these test. See the uk mastocytosis web site for more info on doctors. Some people travel to Spain for tests.

There is a variety of expert opinion on the nhs, don't necessarily believe what you may be told, look at the papers online from doctors in the usa and elsewhere to get your information.

 

Hi Amy, I have Ehlers Danlos, pots and I believe some sort of mast cell problem, I am struggling to get my gp to take it seriously as it's an intermittent thing. I have pain fatigue and when the itchy burning rash flares up on my upper torso face or arms I find it difficult to swallow. I have been prescribed anti histamines but feel that I should see someone who can help prevent the attacks. Have you progressed to a diagnosis yet? Hope you are well :-)

Wow, that was almost like reading about me. I just signed up on this site because I was looking for more information on bone marrow cancer. A while back I had a lab result come back with high Anion gap and I had never heard of that. At that time, I looked it up and it referred me to bone marrow cancer. I asked my doctor about it and he really blew me off. I recently had New labs come back with extremely high B 12 and High carbon dioxide in my blood as well as high and low levels of other things. I haven't even gotten to those yet because when I looked at the B12 and carbon dioxide (which I was surprised about) it led me to bone marrow cancer again; so I'm kind of freaked out. I don't know exactly what's wrong with me but I've had physical signs and symptoms that I haven't had before. I have to mention first that I have an autoimmune disorder called Sheehan syndrome which is better known as Addison's disease (whereas the pituitary does not function) resulting in the lack of adrenal function, thyroid function and lack of other hormones. I have this condition for 21 years now. I'm actually very lucky to be alive as I've survived cardiac arrest numerous times because of adrenal crisis. Unfortunately, I also have Eplepsy; which I developed in 2008. Back to what I was saying about the bone marrow cancer… I've had all these other symptoms but I kept thinking they were somehow related to my adrenal insufficiency. The biggest changes are: shape of my nails, clouded thinking & extremely poor memory now (which I was thinking it was because of my epilepsy medication), lack of energy (which is very unlike me), my hair has become even more thin than it was, sense of taste has changed causing lack of appetite, eye sight & hearing have worsened, depression, anxiety, insomnia since 2008, have developed Reynouds Sp? Where half my hands and feet turn red and then suddenly certain digits go cold, very bad constipation that includes very bad pains on my left side,(under my ribs), heart palpitations, difficulty breathing at times, high blood pressure, bad bruising ( which many of these are also caused by Sheehan Syndrome) and now weird little bumps on my scalp! I have so many bloody things wrong that it's embarrassing to talk about. At this point, I'm wondering if all these problems are related to the bone marrow cancer that I'm trying to find out more about. Oh I have failed to mention that I was told I have bone loss because of long term steroid use ( which I must take to stay alive)! It's resulted in spine problems, my thumbs are being pushed out of socket , have been told I have no cartlidge between all my finger joints and I've shrunk an inch!! I really need opinions and some educational info as well as life experiences so I can figure out what's going on. My doctors don't seem to care or like me...they might assume all my problems are because of the hypopituitarism disorder. I just don't think they are. Please help.