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Systemic Mastocytosis and other Autoimmune Diseases

Djkmom
2 Recommendations

I have to practically live in a bubble. When I get sick, I get REAL SICK!
I was diagnosed almost 2 years ago... I would like to talk to people that are going through the same thing that I am.
From what I have been told this disease is so rare only 280,000 people in the U.S. have been documented, not millions, thousands. So, it has been difficult to find someone who knows what I am talking about. And, It would really help me if I could help my husband deal with this someway... He has been great but how much more can one person take?

Explore topics in this discussion:

Surgery Zantac Syncope Muscle cramps Bronchitis Lupus Fibromyalgia Mastocytosis Stress Asthma Allergies Fever Cetirizine Blisters Wellbutrin Zyrtec Diarrhea Ranitidine MRSA Cancer Allegra Osteopenia Polymyalgia rheumatica Anaphylaxis Prednisone Benadryl Autoimmune diseases Arthritis Sweating Rashes Pain Depression Ear infections

19 replies

JayRo

Hi DJKmom,
Sorry to hear about your disease. I have never heard of it, but I am learning that most autoimmune diseases are not everyday illnesses other than rheumatiod arthritis. Almost 3 months ago I got very sick and thought I had the flu. I finally ended up in the ER and eventually was sent to a rheumatologist. After 2 temporal biopsies, I was diagnosed with giant cell arteritis and probably polymyalgia rheumatica. Both diseases were completely foreign to me also. The MD also said that my bloodwork looks like I have the genetic markers for lupus. On top of that, I have a chronic back problem that seems to be worse since my diagnosis of Giant Cell Art. I am getting terrible muscle spasms in my lower back that are unbearable. Talk about a life altering illness!! My husband has been great also, but I feel so guilty having him do so much. I am only 55 years old, but sometimes I feel 90!! It's been hard for me to find any one who has had this illness also. It's lonely being the only one! I guess we just have to keep going the best we can and hope that our illnesses get better. I always think that mine could be worse, like having a brain tumor or cancer. I try to look on the bright side of things but I know its difficult.

Djkmom

Jayro,
Thank you so much for your letter. I'm not sure what a couple of the things you have listed are, but it helps to have someone understand what debilitating is actually like. Not that I am happy you are sick, I wish you well!
You are the same age as I am. My husband is great but also scared to death... I have systemic mastocytosis which is very rare 280,000 thousand (not millions) in the U.S. Half my doctors don't even know what it is. Which makes it so much harder.
Thank you for your letter and if you ever need someone to talk to I'm here.
Take care
Djkmom

adele

Hi, I also didn't no what it was until I started reading about it, I have alot going on with me I'm 54, I have RA,a rare disease called Nail Patella Syndrome 1 and every 50,000 children are born with it, it effects bones,tissue,musucle,eyes,kidney's and other things, I hav complained all my life that my bones hurt so bad well bones do not have nerves they have cells my system inside feels like my whole body vibrates and and when someone touches me or grabs me the pain is unreal .The Dr's told me that I have fibromyalgia at first I went along with it but I started to think about that because I felt this way since a little girl and my diease effects my cells well when I started to read mastocytosis I began to realize that maybe that's what I have so again I took it my hands and I'm making a apptment with my Genetic Dr. to get tested ,everything they say about masto is happening to me thanks.................Adele

besg

Hello, I was finally diagnosed with systemic mastocytosis 3 years ago.I actually insisted I go to a Dermatologist as my regular MD said that there was nothing wrong with me even tho I had these red itchy hives all over my chest and abdomen for over a year. As soon as the Dermatologist saw me he knew right away although he has only seen about 4 cases in his life time and he is in his late 60's. He is very nice. He ran a bunch of tests and one day, on a Sunday, he called me and told me I needed to see the Oncologist! Now a Dr calling you on a SUNDAY and that you are supposed to see an Oncologist is rather unnerving to say the least. Well my platelet count was low (normal 140 to 160) and mine was around 104. The Oncologist ran a whole bunch more tests. He has only seen 2 other cases and he is in his late 50's. Bone scans, Skeletal survey, Bone marrow biopsy, blood work galore. I have been very blessed as this has remained stable for now. I do have plenty of symptoms which I deal with daily but they could be so much worse. I take plenty of B6 & B12, Ostiobioflex, Citracal, Potassium, along with my 2 antihistamines every day. I get VERY tired very easily and have itching spells that about drive me nuts, pain in my abdomen, muscle cramps, dizzy spells, etc but like I said it could be so much worse. I still manage to go to work every day and manage to do enough house work to get by. I am very blessed as my husband is absolutely wonderful and helps me out. I think my biggest problem is my husband's family. He has 5 sisters of which 3 think I am just faking it and there is no such thing as Mastocytosis. They have been a pain in my side since the day we got married (34 years). And his sister-in-law is, well I call her the sister-in-law from hell. There is where my stress level comes in and there is no getting away from it. I know they cause 90% of my episodes. Anyway my Oncologist said that I could go to Rochester and get a second opinion as he sent the bone marrow up there to be tested. One guy said to leave it alone as I wasn't that bad yet and as long as I could live with things now to leave it. The other guy wanted to use me as a Guinea Pig and try all sorts of Chemo and such which the side effects of that would be 10 times worse than what I live with now. I said NO. There may come a day when I am going to need that but until then NO WAY. So I get by. Most days are good and once in a while I have really bad days where I just can't even face getting out of bed, but those are few. And then there are the in between days where I get by but I feel crappy. Still I feel blessed that it is not worse than it is and scared that it will get worse but I guess we have to take the hand we are dealt and trust in God and do the best we can. I hope that you can at least have ok days and that you can be as pain free as possible. Talk to God, it doesn't have to be a bow your head fold your hands prayer. I have plain ole conversations with him every day. Sometimes I get ticked off and sometimes I get scared, and sometimes I just say how grateful I am that I have Him in my life.
Take care and if you would like to e-mail me it is g.gisch@mchsi.com Best of luck to you.

I really mean it that I would love to connect with SOMEONE anybody who has this. Please!!!

chiquitabrazil

I, too, am a masto patient. My symptoms appeared suddenly after surgery 2 years ago and I am still fighting to get a full diagnosis. I have no spots and am systemic. It's been a hard, long fight trying to get doctors to recognize what they are seeing for I have a LOT of anaphylaxis in all the many forms a masto patient can show. I've tested negative for IgE allergies and yet I react to EVERYTHING, especially tomagraphy constrasts. My doctors, when they knew masto, couldn't believe what they were seeing or what i was telling them, but they couldn't deny that it's all masto and now my BM biopsy is proving it. Yet, it's been a tough road, so I well understand your frustration. My husband has been having to ride the roller coaster right along with me and it's been hard on him too. Yet, it's brought us closer together. Yet in all of this, I've gained a great deal of insight, understanding and help through a masto website calle Canadian mastocytosis Support. It's a site that was started by a Canadian who felt the need to help her fellow Canadians, however, anyone can join the site and it's a great site for the people are willing to help one another and understand just what you are going through. It's a really crazy disease and it's hard to understand because there are so many things that can trigger you. So, if you are needing some more understanding, try getting into that site and see if you can find some help!

Good Luck!

Anniewithspots

Oh My Goodness! Every story I have read hits home so hard! I was diagnosed 4-17-09...A young Dr. (resident) who had only seen one other case like mine. Cried tears of joy to finally know why I am the way I am. I won't go into the life long trials and tribulations I have dealt with at the moment. I work second shift and it's getting near bedtime....The meds he put me on: Gastrocrom (a liquid you drink in water, no taste, 1/2 hour before eating as this masto is in my intestines) the generic of Zyrtec: Cetirizine (as it is in my lungs) Ranitidine twice daily..don't know much on it, and Doxepin before bedtime. In 6 weeks I feel 85% better. Must be on this all my life but it's better than hives, itchy red spots, hives which turn into blisters, boils and the ever present brown spots on my arms, upper torso and legs. They do not itch or bother me in any way (The Spots). One evening when I have time, as I have to see a cardiologist in the morning, I'll relate my wild story of not knowing why. Many Doctors and emergency trips just to hear "Oh it's nothing" Yeah, right, it was all in my head. LOL One Dr. even put me on antidepressants! Needless to say, he wasn't my DR. much longer. Please respond if you want to talk, now that I can navigate this site and will be happy to talk with any and all! Annie...with spots! LOL

cynclaire

Hi djkmom,
I am a 50 yr old mother of 4 who has had the spots since 19 but the disease didn't go systemic until about 42 with stomach, lung, and brain issues. I have osteopenia which we are watching closely. I function daily but need to watch fatigue as it can knock me out a few days. Luckily I do not work outside the home. That pressure on a day to day basis would be difficult and I have admiration for those that do. Anyone who would care to discuss can email me at ccn1977@yahoo.com. I have never had anaphylaxis but since I am functioning I wouldn't do any chemo either. Allegra, zantac, gastrocrom and wellbutrin because I do have depression. I live in a hot climate and these meds seem to keep it in check for the most part. Has anyone else had a tryptase test. Mine was at 37 but dropped to 34 which is great. It shows that stress for me is a real trigger and without the stress the histamine levels in my blood decrease. My bone marrow biopsy was positive for masto in 2003.

hollyhocks1231

i've got it too, systemic mastocytosis. i see my oncologist often...blood tests, etc. it's not fun. i'm currently on "pegysis", an interferon injection i take at home weekly. always have an "epi-pen" in case of "shock", hydroxyurea, a chemo pill. these two meds have kept my blood count fairly normal.

of course i do have lots of symptoms, (flushing, sweating, itching, fatigue, and more), but like you, i feel fortunate to be as good as i am considering how bad it can get.

good luck, and keep in touch.
Diane in Michigan

Bethieb163

For the past 10 years or so I have been struggling to find answers for the symptoms I've been experiencing. I was tested for systemic mastocytosis about 7 years ago, but when the skin biopsy came back negative the doctors stopped pursuing that diagnosis. My "reactions" continued to get worse for the next 5 or so years, and then they suddenly stopped. Within the last month I've had 3 "reactions" that have randomly happened. Being in graduate school at a medical university, I figured now would be the time I could try to get some more answers.

I made an appointment with an allergist, he ran some blood work and then diagnosed me with autoimmune urticaria. While I do get hives, this is not my major concern with my reactions. I'm still not convinced that I don't have systemic mastocytosis, and was wondering if anyone could give me some tips or thoughts on my situation.
Here is an overview of what my reactions look like.

-Begins with a stomach ache (most of the time it would wake me up in the middle of the night)
-I then experience severe stomach cramping and diarrhea
-My head starts to itch
-My face gets flush
-My ears swell huge- almost unrecognizable
-The itching would progress down the rest of my body in the form of hives... mainly appearing on my chest, back and legs
-I was taken to the hospital on several occasions because of anaphylaxis

At the time I was put on zyrtec, doxepin, and xantac, now the allergist has me on allegra and pepcid.

Thanks for your help!
Beth

gavime

Hi there, I am writing about questions with masto. My son is 14 months and we believe he may have it. He has a long history (since birth) of hives, itching, many GI problems and now syncope (seizure -like I guess) He gets very red and itchy, though he has no permanent marks. His liver enzymes are elevated and his CBC is veryoff. he has very few neutrophils and too many lymphocytes. Our immunologist is testing his b12 now too. we are just in the very begining. I've been reading what I can and am scared. Since my son doesn't have the permenant skin lesions... I am wondering if he has systemic type and if so, I am scared ... does that mean it's deadly?

I would appreciate any and all knowledge you have on this.

Thanks, Gavime

Djkmom

Hello, I know I have a few of you waiting for some information from me. I am more than happy to answer as many of your questions I can. I just got out of the hospital for the 5th time in the last 9 weeks, a total of 29 days because of the Masto. Please don't think I am ignoring you. I have been to sick.
If you can wait I will get back on within the next week and try to help you with your questions and offer whatever support I can.
Please stay positive, laugh when you can and cry if you need to.
Peace to you and yours
Take Care;
Djkmom

gavime

Djkmom, Take your time. And many apologies that you're ill right now. I hope you heal quickly.

All the best, Maggie

CSIII

Hello All, First to Beth; if you don't have SM i will be greatly surprised. Your attacks are very similar to mine. Waking up with severe abdominal cramping, diarrhea, nausea, body on fire, anaphylaxis, all happening so fast there is almost no time to react. Six epi pens later, finally put on gastrocrom. No major attacks since then, although I have had some close calls, but extra benadryl, the SMer's best friend, and I have been able to stave off the worst.
To all others, we are on quite a roller coaster ride, a real E ticket. We all have questions and we often have answers to help each other. i've said it before; we are all in this together. No one understands better than us what we are going through. Even though each case has its differences, there seem to be common threads as well. My best to all. Dale

kyss004

I'm brand new to this site, and arrived here because of my visit with an immunologist today. I've had issues with digestion, frequent bouts of bronchitis, strep infections, tonsil infections, joint issues, and finally at the age of 19 I developed life threatening allergies. My skin tests for food allergies were reactive but I went to a new Allergist who performed blood tests for my allergies and came up with negatives. I went to an immunologist to try to find some common thread with all of my life long issues, and he suspects Mastocytosis. My reactions to food often result in anaphylaxis and I have to have at least 2 epi pen's with me at all times. I'm tired most of the time and get itchy frequently for no apparent reason. I am often nauseous and light headed as well. Reading the symptoms of SM, I felt like I was reading my life story. I'm terrified...any words of advice? The doctor is running blood tests to get more information-

catdani

Gastrocrom! I know it doesn't work for all but I think most have some improvement. If food is something that really causes you problems Gastrocrom helps in this area.
Food is a big problem for me. I can narrow it down to what is going to set me off but sometimes something I have eaten before and been fine will cause a horrible reaction next.
I still have some problems ,still it is nothing compared to what I had before.
I have been lazy and haven't been taking all the doses but I never miss a morning dose! It helps with the stomach and the itching.
Good Luck! There are many people on here that have suffered from this for years and can give you advice on what they take or if they are experiencing the same reactions!

tdubya

Beth,
Do your episodes always or typically happen at night?
For the last three years I have had what they can only call idiopathic anaphylaxis. Depending on how long I go before interrupting the event with medication I may have asthma-like symptoms and stomach and chest pains to headache, fever, severe gastrointestinal issues, swelling and hives. I have no known food allergies and have never had hives before in my life (I am in my early 30's). Food allergies also seem unlikely because there is no apparent link between my diet and symptoms and they almost always occur in the late evening or wake me in the night. Lately I have had a lot of stomach issues and a colonoscopy showed essentially nothing. It sounds like you may have had some of these issues. Do you think this could be SM?
I hate to be one of those self-diagnosers, but I am getting to the point where doctors sort of shake their heads and give me the crazy eyes.
tb

Bethieb163

tdubya,
Most of the reactions I can remember have happened in the middle of the night. I can only remember a handful of times that they happened while I was already awake. I, too, was diagnosed with idiopathic anaphylaxis and I wore a medic alert bracelet for several years. My episodes suddenly stopped happening, which made me think it was environmental or that I had grown out of it-- until about three months ago. My allergist believed that I had a break through with my current medication, so he changed it. I haven't had any more reactions, but I'm not convinced that I don't have SM.

What types of doctors typically specialize in SM? I've seen a few people mention oncologists, and allergists... any other specialists?

Djkmom

Hello, I am still down but can share a few things that has been going on or see if I can give some answers.
First I would like to say how sorry I am that you all have this horrible disease.
I have just spent 29 days total in the hospital. I was in & out 5 times. My thyroid stopped and so did my stomach. When I ate food it would just sit in my stomach filling it up till I thought I would bust. They now have me on several small Low Resolution Diet it is helping. I did not give up! I refuse to believe I am going to die although at times I feel like I am. Believe Always in God and yourself that you Will get through this.
The best doctor to see or in my case is an Immuniologist. He sent my blood to the Mayo clinic and my numbers have been bad. 36 was my last and that has gotten better.
I was 115 lbs when I got Bronchitis(I thought) I dropped to 89 lbs in weeks. The good news is I have gotten up to 97lbs! Tho with my stomach shutting down it's been very hard to maintain that wieght. I do drink 3-5 High Protien Boost a day. That is what's sustaining me now. Pedisure would help with the babies.which I am very sad the little ones have this and I pray they won't suffer like us. I have 4 rashes at times, 2 all the time. The itching about my head & ear area drives me nuts!!! I take about 30 different medications a day(which I will gather and give you the names next time) Gastrocrom, Ranidine ect. I do take religiosly.
I feel like I am barely hanging on by a thread. What keeps me going is the sadness I see in my husbands & my sons faces. It makes me keep trying for another day and you should too. Both my parents died 2 weeks apart this year from old age. My dad has been crippled all my life, he was always the one I talked to for inspiration. When he died I crashed and burned and still fighting to get out of the flames. Find someone that you see or know that can't walk or parallized(my nieghbor) and see how bad or hard it is for them. To me I feel pretty lucky I can still walk. If you get what I mean.
No more pity parties for me!!! I Want To Live I Have 2 little grandkids I want to see grow up. No matter how sick I get I think of ALL of the people that love me and what dying would do to them. So for me dying that's not an option! I might not be able to go out or eat with them. I just love them and stay strong for them. My husband has been Fantastic!!! He is even teaching himself to cook and does the grocery shopping and ANYTHING he now knows I just can't. So stay Strong, stay Positive and make yourself Smile about something at least once a day, it will make you feel better even if it's just for a second or two.
I have to rest now....
Take Care
Djkmom

Rno

OMG! I have not been diagnosed with anything yet, but this sounds EERILY familiar! Let me brief you on my story.
I have been sick non-stop with all kinds of infections for over 2 years (at least). I have developed horrible allergies to seasonal type things, to 6 antibiotics and have asthma symptoms. I recently got in to an allergist for the first time (one that believes something isn't right) and have so far been tested for asthma. The asthma tests were all beautifully normal, as she stated.
I have had two anaphylactic reactions to two antibiotics as well as a worsening in one while in the ER because I reacted to Pepcid when they injected it. I have battled low blood pressure since I was 13. I have had non-stop ear infections, colds, bronchitis, kidney/urine infections, MRSA infections and a few bouts of stomach flu. I have also been battling fatigue to the point where I can no longer work because I don't have enough energy (with coffee) to make it through an 8 hour day and not be deathly ill.
I have also had this constant bloating feeling ever since my first anaphylactic reaction. I mentioned the 6 antibiotics I am allergic to, but I also have started reacting to the Prednisone they put me on every time I have an anaphylactic reaction. I also have a few other drugs that I am more sensitive than normal to. My whole life I have had ear problems. My ear canals are tiny so the slightest inflammation causes ear infection. I also cannot heal properly. I was in a few car accidents where my right shoulder was injured and it took almost 2 years to get the inflammation under control just so I could function. If I get a cut it takes forever to heal but also scars like crazy and I bruise easily.
Does any of this sound familiar? I am hoping that on Wednesday I will get more information. I have skin testing for seasonal allergies so if those come back normal, then I am definitely going to mention this to the doctor!

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