Mast Cell Activation Symptomatology

[taniaaust1]

A few people have mentioned "attacks". What are these attacks meant to be like? I get so many symptoms fluctuating all the time, I have no idea what could be meant here.

From what Ive seen and read, I think the mast cell issues attacks can present differently in people.

My uncle when he had an attack of systemic mastocytosis (as he lives interstate, I only seen him once at a funeral..and he had an attack there)... from my observation of his attack (so of cause I couldnt "see" any invisible symptoms he had) .. but he went into breathing issues (he had to be put onto oxygen due to the breathing issues) and had a near collapse (he was left unable to walk.. before that.. he started to stagger).

He also was hard to communicate with while this was all going on... so brain fog/trouble thinking and speaking.. speech went very slow and like stammering as he struggled with his brain. (with him.. i couldnt see any skin symptoms.. his excessive mast cells are internal.. He thou did look ill)... and I assume he got a headache by the way he kept on putting hands to his head. (my uncle goes into anaphalactic shock with his attacks).

Other people get things like swelling during an attack. The symptoms I suppose would all depend on where the person had excessive mast cells and in which organs they are in.

 

[Calathea]

The thing is, without the swelling, that's standard ME-collapse stuff, and I'm still not seeing any reason to believe that it's a marker for mastocytosis in the absence of a diagnosis.

 

[taniaaust1]

The thing is, without the swelling, that's standard ME-collapse stuff, and I'm still not seeing any reason to believe that it's a marker for mastocytosis in the absence of a diagnosis.

Yes.. much of that stuff is very much like ME/CFS stuff ..hence why there is likely to be quite a few people at sites such as these who actually do have mast cell disorders and have been wrongly diagnosed.
Note exercise can trigger mast cell issue attacks too.

There is a few things thou to watch out for in which mast cell disorder could be strongly suspected and hence needs to be ruled out.. eg flushing, MCS like reactions and dermographism, this kind of combination of things going on.

Darier sign is another thing (I think that is often seen as a positive sign of this kind of disorder).

Note..there was also a study done in which they found that everyone in the study who had POTS and orthostatic hypertension (it wasnt a ME/CFS study but it caught my eye as I have both of those things)... on testing for mast cell problems.. 100% of the ones in that study were then all found to have mast cell disorder. So that combo I'd think also would be strongly suspect for this kind of disorder. (that was a small study.. cant remember how many were in it 12-20 people..but very interesting result seeing all were then found to have the issue).

It would be very interesting if a ME/CFS study was done (using a good ME/CFS definition say the canadian).. to see just how many of those diagnosed with ME/CFS have actually mast cell disorders going on. Im not sure what they would then do if mast cell disorder was found..would that automatically mean the diagnoses of ME/CFS were wrong? seeing mast cell disorder can be so alike ME/CFS in many ways?

 

[MNC]

This is what is probably affecting some of us. Worth watching:

Mast Cell Activation Symptomatology (Part 1 of 3)

Mast Cell Activation Symptomatology (Part 2 of 3)

Mast Cell Activation Symptomatology (Part 3 of 3)

Nanoung, have you considered that electromagnetic fields might be the cause or aggravator for this illness?

See this study: http://www.ncbi.nlm.nih.gov/pubmed/10859662

This would explain why many of us get stuck once we are ill and we spend lots of hours on the internet or watching TV, etc.

I know for sure that when I got my first computer 20 something years ago, my illness got a million times worse. I have researched a lot the electrosensitivity thing, but never put it together with mastocytosis or masto cell disease.

For what I read this would explain all of my symptoms, all of them, but I asked the Mastocytosis expert and said she didn't believe I had it.

I might insist though, if I find some energy to.

Regards

 

[nanonug]

Nanoung, have you considered that electromagnetic fields might be the cause or aggravator for this illness? See this study: http://www.ncbi.nlm.nih.gov/pubmed/10859662

http://www.ncbi.nlm.nih.gov/pubmed/10859662

It is an interesting hypothesis. I guess it would need some actual testing to prove or disprove, tough.

For what I read this would explain all of my symptoms, all of them, but I asked the Mastocytosis expert and said she didn't believe I had it.

Was it an hematologist or immunologist? In any case, insisting on testing, either for mastocytosis or mast cell activation, would seem advisable if you have all the symptoms.

 

[MNC]

It is an interesting hypothesis. I guess it would need some actual testing to prove or disprove, tough.

Was it an hematologist or immunologist? In any case, insisting on testing, either for mastocytosis or mast cell activation, would seem advisable if you have all the symptoms.

First I went to a dermatologist who discarded it after just testing my skin.

So I insisted and talked on the phone to Dr.Escribano, one of the world's leading doctors in Masto who happens to be Spanish like me and runs one of the best specialized units in the world in a public hospital not far from Madrid. He said I could have Masto for my symptoms but he needed to see me and test me. I told him I couldn't travel (just 70km away but for me it is impossible) so he told me to send all my medical reports and tests. I did and a doctor of his team replied saying she didn't think I have it.

Still, I will insist for a third time and I will do my best to get there (Toledo is called the city), or at least try to get the Masto tests done, at least the tryptase one.

This is their web site: http://mastocitosis.org/

If you find something more about electomagnetic fields and masto cells please post it here.

Regards.

 

[Sherlock]

Btw, that's very interesting that histamine (or mast cell cytokines) can create reactive nodes and spleen

I have to correct myself: in mastocytosis, apparently lymphadenopathy, splenomegaly and hepatomegaly arise merely from proliferation of mast cells alone. That was said by one of the docs in the video under discussion. So there is not generalized lymphocytosis, e.g. --- at least it's not mentioned in the video.

 

[taniaaust1]

The following is on couple of types of Mastocytosis (which is only one type of mast cell disorder) but I thought it was interesting.

http://www.nhs.uk/Conditions/Mastocytosis/Pages/Symptoms.aspx

Systemic mastocytosis

If you have systemic mastocytosis you will have sudden attacks of symptoms that last around 15-30 minutes. Most common symptoms during an attack are:

• hot flushing – described as a dry feeling of heat, rather than the sort of wet heat you experience when sweating
• palpitations (irregular heartbeat)
• lightheadedness

Less common symptoms during an attack include:

• headache
• shortness of breath
• chest pain
• nausea
• diarrhoea

Once the attack has passed, you will probably feel lethargic (sluggish) for several hours.
These attacks are caused by the mast cells suddenly releasing excessive amounts of histamine, usually after you are exposed to certain triggers. Triggers known to cause attacks include:

• physical factors, such as heat, cold, fatigue and physical exertion
• emotional factors, such as stress and excitement
• certain foods, such as cheeses, shellfish and spices
• bites and stings, such as flea bites or a wasp sting
• infection, such as the cold or flu
• alcohol
• certain medications, such as ibuprofen, aspirin and antibiotics

(that is just a piece of the info at that link, the link is worth checking out). Quite symplified but is something to look out for. So many masto triggers are ME/CFS ones, note thou not listed.. chemical exposure can also cause a masto crash.

Note.. if one with masto gets an attack.. the symptoms wont go if they are still responding to a triggering thing if they are still near it or whatever, so its possible for a person to stay sick rather then only have quick masto attacks. My masto uncle is basically never really well..

 

[Marlène]

Nanoung, have you considered that electromagnetic fields might be the cause or aggravator for this illness? See this study: http://www.ncbi.nlm.nih.gov/pubmed/10859662

It is an interesting hypothesis. I guess it would need some actual testing to prove or disprove, tough.

How interesting, I made that observation too a while ago twice but don't know if it has anything to do with mast cell disorder.
1) when I am more ill, I can actually feel the radiation of my laptop
2) once I had to go under a scanner (head) and I felt the radiation going through my head inch by inch.

Doctors still argue whether I not have lupus because of my skin rash. My symptoms are getting sick of the sun, food, all kind of smells, horrible headaches, itchy skin, belly pain, chest pain, ... hmmm, think I might consider the option.[/quote]

 

[Marlène]

What to do? Break down the histamine, blockade the histamine, stabilize mast cells. Inhibiting histamine synthesis is probably not viable.

Break down the histamine: is niacine an option?

I take 100 mg at night together with a sleeping pill since a few weeks and I feel better. However, I don't know if it is linked since I started a whole bunch of new supplements.

Niacine during daytime wipes me of me feet for several hours, which is not an option.

 

[nanonug]

My symptoms are getting sick of the sun, food, all kind of smells, horrible headaches, itchy skin, belly pain, chest pain

Well, this is certainly consistent with some kind of mast cell screw up, mastocytosis or not. There is this European Mastocytosis Support Network website you may want to look at.

 

[nanonug]

Break down the histamine: is niacine an option?

Niacin induces prostaglandin D2 release from mast cells. I don't think it's a good option for people with mast cell issues if that is indeed your case. Besides, histamine is just one of the many substances mast cells release. A better idea, in my opinion, is to stabilize the mast cells and prevent their degranulation or activation in the first place. The thread ME/CFS is a mast cell disorder (hypothesis) has some info on what to do in this respect.

 

[Sherlock]

Niacin induces prostaglandin D2 release from mast cells.

Check instead into Langerhans Cells as the critical initiators. I can look up the cite if you like.

 

[nanonug]

Check instead into Langerhans Cells as the critical initiators.

Interesting, I wasn't aware of this. Thanks for the heads up! (I was able to locate the relevant literature)

 

[Sherlock]

Break down the histamine: is niacine an option?

I take 100 mg at night together with a sleeping pill since a few weeks and I feel better. However, I don't know if it is linked since I started a whole bunch of new supplements.

Niacine during daytime wipes me of me feet for several hours, which is not an option.

Wipes you out how?

It could be said that niacin will result in the massive release of histamine and prostaglandins, and so deplete them at least for a while. But that sounds like too much in your case, and the reaction is unusually long.

The short answer of preventing release lies possibly in using quercetin. After taking quercetin, I hardly flush at all.

 

[nanonug]

Check instead into Langerhans Cells as the critical initiators.

OK, things might be even more complicated!

Seeing red: flushing out instigators of niacin-associated skin toxicity.

Keratinocytes might be the culprit after all. More at 11!

 

[Sherlock]

Interesting, I wasn't aware of this. Thanks for the heads up! (I was able to locate the relevant literature)

Sorry, I should have posted at least one link:
http://molpharm.aspetjournals.org/content/70/6/1844.full

Nicotinic Acid-Induced Flushing Is Mediated by Activation of Epidermal Langerhans Cells


Btw, do you have insomnia and/or nocturia and did your mast cell stabilizing strategies help with that?

 

[Sherlock]

OK, things might be even more complicated!

Seeing red: flushing out instigators of niacin-associated skin toxicity.

Keratinocytes might be the culprit after all. More at 11!

ha, and platelets also mentioned there.

What I find noteworthy is that quercetin would work well for flush suppression in most dyslipidemia patients, better than aspirin, yet few clinicians know about it. That's an example of something beneficial taking a long time to becoming accepted.

 

[nanonug]

do you have insomnia and/or nocturia and did your mast cell stabilizing strategies help with that?

I used to have both a few years back but somehow managed to fix them. I am not entirely sure what caused the "fix" but I suspect it has something to do with lithium orotate which I took for years, at 5 to 10mg/night.

 

[Marlène]

Wipes me out = unable to stand on my feet for several hours as if I'm awaking from heavy anesthesia, feeling very sick too. The flushing is very painful, I don't have any good feeling afterwards.

My doctor advised me too take niacin because of my huge cholesterol (400) and a suspicion of Lyme. Parasites don't like sudden heat in the body.

At first she didn't believe me when I said the type of reaction it caused. Then another patient of hers with confirmed Lyme had the same issue, which made her change her opinion. She now thinks it has to do with the sympathic nerve system.