Mast Cell Activation

Posted by danmlee @danmlee, Jan 17, 2017

Is there anyone that has MCA?,I live in Duluth and have just begun all types of testing for this nightmare (I.e. Blood test and bone marrow and 24hr Urinalysis)and they always come back negative in the since of trying to diagnose but I have been dealing with this since last year but didn’t know what the heck was going on in my body.It started with just a skin rash at first but since last year till now I have developed allergies to foods I never had and now my body is so sensitive to heat change because within seconds my feet start tingling then swelling starts then my hands start swelling and the full breakout begins (niacin flush type feeling begins and doesn’t stop)little scab like rash (like what fibromyalgia patients get)then the felling of vomiting begins.So I am so frustrated because all test keep coming back negative to get “DIAGNOSED”for MAST CELL to see how to treat it,even though I know that it is even the Oncologists and Allergist believes it is MCA so having to be my own advocate and research I have begun the “Low Histamine Paleo Food Change” But trying to cope day to day and for the most part living in my bedroom because I don’t want to freeze out my wife or just feeling like my life is being robbed and my personality and to make things worse Dr.Afrin is booked out till 2018 and someone told me here in Duluth that is who you must see,so there goes that idea.I just sometimes want to give up because sometimes this Mast Cell makes you feel like you are loosing your mind.And I have no one to talk to that can relate to this,so there is my ramblings is there anyone who I can talk to that has this “CRAP”.

Liked by dolan

Finally someone that understands my plight. Yes, this disease is a nightmare and when I have an attack, my face almost gets disfigured due to extreme swelling and allergy type breakout. This in top of extreme itch that makes me want to use a knife and peel my skin off. One of my doctors states there is now a vaccination for mast cell, with conditions. First off you must have experienced this under Dr care for at l ast one year before being considered for the vaccine. He stated currently it is basically out of financial reach for those who need it (such as me) because it’s over four thousand a month, one vaccine and must be continued for around ten-twelve months in order to become effective. I failed to write down the name as he cost was enough to know I’ll never be getting it. Oh, and insurance as I am on Medicare, won’t pay any portion. This may change in the future however I shall not see this in my lifetime more than sure.

Liked by barbarn

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@jennybay

Finally someone that understands my plight. Yes, this disease is a nightmare and when I have an attack, my face almost gets disfigured due to extreme swelling and allergy type breakout. This in top of extreme itch that makes me want to use a knife and peel my skin off. One of my doctors states there is now a vaccination for mast cell, with conditions. First off you must have experienced this under Dr care for at l ast one year before being considered for the vaccine. He stated currently it is basically out of financial reach for those who need it (such as me) because it’s over four thousand a month, one vaccine and must be continued for around ten-twelve months in order to become effective. I failed to write down the name as he cost was enough to know I’ll never be getting it. Oh, and insurance as I am on Medicare, won’t pay any portion. This may change in the future however I shall not see this in my lifetime more than sure.

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@jennybay that is really horrible that there is something that could probably help you but is beyond reach, financially. Maybe they won’t pay because it’s effectiveness is not yet proven. If so maybe it will eventually be covered.
The pharma companies are so greedy. Young people who want to make large incomes typically gravitate toward pharma, knowing the opportunity for big bucks is there. A young woman we know works in that field and is easily a millionaire at this point, with many perks.
JK

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@jennybay

Finally someone that understands my plight. Yes, this disease is a nightmare and when I have an attack, my face almost gets disfigured due to extreme swelling and allergy type breakout. This in top of extreme itch that makes me want to use a knife and peel my skin off. One of my doctors states there is now a vaccination for mast cell, with conditions. First off you must have experienced this under Dr care for at l ast one year before being considered for the vaccine. He stated currently it is basically out of financial reach for those who need it (such as me) because it’s over four thousand a month, one vaccine and must be continued for around ten-twelve months in order to become effective. I failed to write down the name as he cost was enough to know I’ll never be getting it. Oh, and insurance as I am on Medicare, won’t pay any portion. This may change in the future however I shall not see this in my lifetime more than sure.

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Ah, good to hear such kind and hopeful words. I need that hope as do many. Any and all information on MCD is much appreciated.

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@patrick6726

I'm from Duluth MN as well. Saw your news tribune article as well. But like you have been struggling with this for years now. I was dealing with an undiagnosed chronic sore throat-cough and moderate digestive issues for a few years prior that I never got checked out….at the time it was a very annoying nuisance, I was somewhat miserable, but at least I could function decently enough. It wasn't until after I took something. Just like your cortisone shot, there was a trigger for me. two supplements together, niacin and chromium….took them in the morning, and immediately felt a odd cooling sensation of what felt like water, up my neck, and then down my left arm. Didn't think anything of it at the time. But then like 12 or so hours later, I had the worst psychological feeling I've ever had in my life, just like a sinking death, impending doom, oh my god something is wrong type feeling. Then A few hours after that, wow did things go to absolute hell. Shortness of breath, alternating massive burning sensations and whole body going completely numb, i Couldn't even sleep for the first 2 days or so. Every time I tried and started dosing off, I would get jarred back awake by my body. I thought it was the end. And well, 4 years later kind of wish it was actually considering the life it's given me or lack thereof. Been to emergency room twice since initial onset. Just React to absolutely everything now. There's a mine field of triggers that are just impossible to avoid. And the kicker is that medications-supplements-herbs are one of the worst triggers. How can I get better if I can't tolerate something that's meant to heal me.? I realized less is more when it comes to quality of life…..but it just hasn't been nearly enough. It seems the only way would be to live in a completely sterile bubble in which I wouldn't have to eat or drink anything. And that's obviously not very plausible. Not a lot of hope left. Anyway, I don't know if you'll see this a year or so later. But have you found anybody else in the Duluth area who's dealing with this? And have you been able to improve your health?

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I am moving to the Twin Cities shortly and am hoping to find a doctor at the Mayo. Any suggestions are appreciated for Mayo doctors that specialize in mast cell! Thanks!

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I live in St Cloud and have suffered from multiple health conditions over the last several years. At many times I was overmedicated which just exasperated my problems. Trying to get anyone to listen to me was almost impossible. I have been misdiagnosed more times than I can count. I can pinpoint to one time where I became very ill, high fever, severely lethargic, sore throat, headache. I couldnt get out of bed for 4 days and didnt have access to medical care. Ive never been the same. I started having severe gi issues, losing 65 lbs in 3 months. So severely nauseous I couldnt eat and had severe diarrhea almost daily and have had for the last 18 years. I was diagnosed with ibs but have had no resolution. Due to some life events i became severely depressed. I was put on antidepressants which rather than providing relief they started creating a new set of issues. The more I said they werent helping and the more side effects I was having, drs kept adding new medications. At one time i was on over 30 medications. Last summer I was diagnosed with mast cell. Allergy tests came back normal, but biopsies were done and confirmed mast cell. Sometimes I feel like im the one doing all the diagnosing. I have had to research and push for every test ive had. In December of 2017, i figured out that side effects to my depression and anxiety meds were what was causing the severity of my mental health symptoms, to the point of almost ending my life multiple times. Also, discovering multiple food allergies and medication allergies and sensitivities.
They seem to be growing in numbers. I have malabsorption issues and vitamin deficiencies as well. I have reduced my med list as much as possible. Ive even tried medications for mast cell but they only cause more problems. I am currently fighting three infections in my body that ive had since June. No meds are working, only creating more problems. I will be seeing an infectious disease specialist to help me. Im hoping i can gather some information from him about what to do in the future as i struggle with infections, symptoms, allergies and ever-growing side effects. This is definitely a frustrating disorder and can definitely contribute to feelings of hopelessness. I would love to hear from others with mast cell. Side note: Dr Afrin has moved from the U of M to Armonk, NY. His clinic does not accept insurance and is strictly out of pocket.
Best of luck to anyone struggling with this disorder.

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@kanaazpereira

Hello @smbryce1,

I sincerely appreciate your follow-up of posts in the Mast Cell Activation group on Connect – welcome!
You mentioned, "…after I posted this it showed me lots of replies," and as moderator of this group (Skin Health), I thought I'd also clarify that it's an active conversation, especially with the shared experiences and valuable responses offered by other Connect members in this discussion. I also hope that @danmlee has found good resources and some relief for coping with MCA.

The benefit of sharing in the community is that you can receive information and support from a knowledgeable group of people; it is awesome that you have chosen to be a participating member of the Connect community; would you be comfortable in sharing more about your treatment and what has helped you led a better quality of life?

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Finding what helps people with mast cell disorders either with mastocytosis or mcas or the newly discovered familial Tryptasemia or Hereditary Alpha Tryptasemia Syndrome, can take a lot of time and trial and error because mast cells release or control chemicals that can cause hundreds of symptoms. And because, as One mastocytosis patient told me, we are each like our own portable chemistry set.

For me the things that helped improve my quality of life most were eliminating triggers, staying hydrated, and finding a daily antihistamines (h1/h2 inhibitor combo) that I could tolerate and help, a leukotirine inhibitor, Which is like Singulair or Zyflo or One other I’ve never tried, and a mast cell calling medication which for me means Ketotifin tho some use Gastrochrom or some version of it.

Gradually raising the dose of Ketotifin till I was at a good for me level (most people don’t see improvement on it till they reach the right dosage for them which for me is 10mg three times a day) it has a 12 house half life so most people take it twice a day, but some of us find more improvement with three times a day. and most I’ve spoken with seem to find improvement with 2 to 6 mg doses.

For me staying hydrated has been elusive. I have reacted to the oral rehydration drinks I have tried. Next on my list is somethint called Nuun if I can find some without citrus. Currently I recieve iv hydration as needed.

I found and eliminated triggers to the best of my ability by keeping a symptom and possible trigger log (I use the app called “mysymptoms” available on both Apple and Android last I checked, and there’s are others like it.

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@jennybay

Finally someone that understands my plight. Yes, this disease is a nightmare and when I have an attack, my face almost gets disfigured due to extreme swelling and allergy type breakout. This in top of extreme itch that makes me want to use a knife and peel my skin off. One of my doctors states there is now a vaccination for mast cell, with conditions. First off you must have experienced this under Dr care for at l ast one year before being considered for the vaccine. He stated currently it is basically out of financial reach for those who need it (such as me) because it’s over four thousand a month, one vaccine and must be continued for around ten-twelve months in order to become effective. I failed to write down the name as he cost was enough to know I’ll never be getting it. Oh, and insurance as I am on Medicare, won’t pay any portion. This may change in the future however I shall not see this in my lifetime more than sure.

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I haven’t heard of any vaccinations for mast cell disorders. Is this something brand new that Mayo is trying?

Or maybe Did your doctor mean Xolair? It’s a shot I am seeing used more and more often. It has its own risks and side effects, but for those it works for it seems worth it. Insurance can cover xolair, or one of the others in the same class or medication, even Medicare if your doctor prescribes it correctly. S/he may not know how to do so. If he was recommending one of this class of drugs insurance only covers it currently for chronic urticaria or asthma patients, if you have certain test results. So if you have chronic hives or (I think) high leukotirines causing asthma like symptoms, it may be doable! Worth looking into if you haven’t found other treatments helpful.

There also are other treatments, many of which I mentioned in my reply above.

Best wishes on finding your best health within this weird and awful disorder!

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Depending on which area was biopsies and what the biopsies said you may have one of several types of mastocytosis and I highly recommend you join the mastocytosis Society on inspire no matter which form of mastocytosis was found. You can find them at tmsforacure.org and their inspire group is very helpful as well

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@patrick6726

I'm from Duluth MN as well. Saw your news tribune article as well. But like you have been struggling with this for years now. I was dealing with an undiagnosed chronic sore throat-cough and moderate digestive issues for a few years prior that I never got checked out….at the time it was a very annoying nuisance, I was somewhat miserable, but at least I could function decently enough. It wasn't until after I took something. Just like your cortisone shot, there was a trigger for me. two supplements together, niacin and chromium….took them in the morning, and immediately felt a odd cooling sensation of what felt like water, up my neck, and then down my left arm. Didn't think anything of it at the time. But then like 12 or so hours later, I had the worst psychological feeling I've ever had in my life, just like a sinking death, impending doom, oh my god something is wrong type feeling. Then A few hours after that, wow did things go to absolute hell. Shortness of breath, alternating massive burning sensations and whole body going completely numb, i Couldn't even sleep for the first 2 days or so. Every time I tried and started dosing off, I would get jarred back awake by my body. I thought it was the end. And well, 4 years later kind of wish it was actually considering the life it's given me or lack thereof. Been to emergency room twice since initial onset. Just React to absolutely everything now. There's a mine field of triggers that are just impossible to avoid. And the kicker is that medications-supplements-herbs are one of the worst triggers. How can I get better if I can't tolerate something that's meant to heal me.? I realized less is more when it comes to quality of life…..but it just hasn't been nearly enough. It seems the only way would be to live in a completely sterile bubble in which I wouldn't have to eat or drink anything. And that's obviously not very plausible. Not a lot of hope left. Anyway, I don't know if you'll see this a year or so later. But have you found anybody else in the Duluth area who's dealing with this? And have you been able to improve your health?

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Please, keep us posted on your results and dr recommendations. This is an extremely miserable whole body issue!

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I am under the impression that all forms of POTS including MCAS have no treatment available for the actual dysfunction. I am treating the symptoms of POTS

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I have a trigger finger due to brachial plexus injury. I apologize for last post. I was told by many doctors that exercise is the best thing you can do for the symptoms of POTS. I cannot get treatment at the Cleveland Clinic for POTS, but am able to ask for medication to try. None of the meds do much. Mestinon seems to be most helpful as a digestive stimulant and Powerade mixed with salt keeps me hydrated throughout the day.

Liked by joyhines03

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Does anyone know of a doc around nj/pa

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@defeatedsteph

Hi Everyone,
I am looking for any help, ideas or support. I feel so defeated. Still NO Diagnosis. I relate to everyone else on the blog that says they feel they are going crazy!! A doctor has even told me that my symptoms are obviously in my head and need to check out psychiatric since my tests are negative….Ok, so here is my story. I am 30 and going on 5 years with dealing with this madness and I am exhausted being my own advocate. I have seen so far up to 12 specialist each in their own specialty to figure out my various symptoms. I have always suffered from severe environmental allergies and asthma, but 5 years ago everything changed. I started getting worst without any obvious reasons. Loosing consciousness after eating, becoming allergic to foods I never been before; drugs as well; brain frog; massive weight gain or lost; body pains (I feel like im 86); face flushing; tongue/face/hands/legs swelling; Gastro issues; persistent fatigue…ect.. you name it I have experienced it all except the typical mastocytosis rash.

I have since had over 12 related ER visits including 4 Idiopathic anaphylaxis reactions; 3 Food related anaphylaxis; 1 insect sting anaphylaxis (then test negative for insect bites both skin and blood). I test negative for all test, allergy, tryptase serum, 24hr urine test, but still struggle everyday with my allergies. I take daily 40mg citrizine; singulair; symbicort nose pray; zantac on/off. Still can’t control these attacks and it is becoming destructive on my life since I no longer go out, lost work, postponed school. I now only eat a low-histamine Paleo white meat only diet and if I dare become lax on my strict diet I pay the consequence dearly.

To complicate things even more, I was diagnosed with a large brain tumor and 3 weeks later had emergency brain surgery 6 months ago. So my doctors at the moment all said that my symptoms have been compounded and now cannot distinguish some of the symptoms thus will not make a clear diagnosis of MCAS without positive tests results. But my symptoms and attacks keep getting worst since surgery.

Last year I was lucky and found a family doctor that believes something is wrong since I presented my medical binder (2inchs thick!!); Records and test after test and research articles for everything I was tested on! I am on my 3rd allergist and he seems to take my case seriously when I see him every 6 months. He mentioned that the Mayo clinic may help us find a diagnosis that deal with difficult cases of MCAS, but I live in Canada and cannot afford airfares and medical test in the US. Is there anyone that knows about funding, or test kits for my doc? Or even the cost of being diagnosed? Any resource? I’ll take any ideas or suggestions and even words of encouragement. ☺

I understand that a diagnosis bring little relief since there is no cure. It would stop the ER docs from thinking I’m the crazy lady, or worst! Delay treatment like I had a few times (cause they never seen or heard case like mine before) when I present with atypical allergic reactions.

In my experiences very few doctors know about MCAS and fewer know how to treat it and less diagnose it. ☹

I’m so sorry for the long story but I feel everyone can relate because cases of MCAS are beyond complicated.

i’m exhausted and feel defeated

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I can help you. Look up mast attack and are you on the mast cell groups on fb?

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@jobby99

I am under the impression that all forms of POTS including MCAS have no treatment available for the actual dysfunction. I am treating the symptoms of POTS

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Ummm that is not true. Ketitiphen, crommolyn and a h1 and h2 treat mcas

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@joyhines03

Ummm that is not true. Ketitiphen, crommolyn and a h1 and h2 treat mcas

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I’m going to present this to the specialist and suggest this as my healing. Thank you for the info

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