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indolent systemic mastocytosis

marcia3
  • By marcia3
  • Posted November 5, 2006 at 12:26 am · 24 replies
  • Shared with the public
1 Recommendation

I would like to communicate with someone who has indolent systemic mastocytosis. I would like to find someone who understands what I am going through. Thanks!

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Explore topics in this journal entry and replies:

Exercise Asthma Cancer Leukemia Melanoma Skin cancer Pulmonary embolism Anxiety Pain Anaphylaxis Rare diseases Depression Mastocytosis

24 replies

methiffany

HI. I am 37 and was diagnosed with indolent systemic mastovytosis. It took doctor's almost three years to figure it out. It has been a long and frustrating year since I was diagnosed, but at least I finally know what is wrong and that it is not all in my head.

Sharon

Hi methiffany,
Me to! I was diagnosed at age 34 with systemic mastocytosis, am now 47. Welcome to the world of rare diseases. It is a very odd place, but we have a great group of masto people here on this site. Also some great info on www.tmsforacure.org. and some lively discussion at
http://purl.org/net/masto
I so relate to your comment about knowing what is wrong and that it is not all in your head. At one point in my diagnosis I became convienced that it had to be in my head - I went to one the head of the Pscychiatric department at Emory Medical School to tell me that I was a hypochondriac or something and to get started on treatment. He had one of his very bright residents reveiw all my records and sent me back to the masto Doc's.
I have been on various masto meds since that time. I have had some excellent days and some really bad ones, but in between I have gotten married, travelled, and enjoyed some really good times. And I have logged some hospital time to.
Feel free to contact me anytime.
Sharon

methiffany

It is always nice to have someone to talk to. My mother still believes that it is all im my head. I had to go to soooooooooo many specialists, they all had their own ideas and diagnoses, before I fell upon an allergist. I never would have been tested, but he hired me as an employee. After watching me scratch all day and turning bright red because of it, he had my tryptase tested. thank god.!! All of my "problems" finally make sense!

I am tired about always being tired though. Don't know if I will ever get used to that. I am not super active, but geesh,,,,,,,,I never stop yawning. I did not know that it was possible to take so many pills in one day. But, they do make me feel better, so bring them on.!

Has your Tryptase remained stable? Have things changed much for you in the past 10 years?

thank you.

Sharon

Hi Methiffany,
Despite the fact that my tryptase seems to remain fairly stable, I have had times that I have been able to work full time at very demanding jobs and maintian an active social life and have had times where getting out of bed and dressing myself was an overwhelming chore.
I had a period from fall of 1996 to 2002 or so that I had very few symptoms. In 2002 I had to cut back to part time work, but was able to do that pretty vigorously and still stay pretty active.
The last couple of years for me have been quite rough and unstable - much like the first couple of years after being diagnosed. In fact, we have been using the records from the Doc's that were treating me then, to compare to what is going on now (I moved, so unfortunately not the same Doc's) - to try to get me a little more stable.
Daily I take an H1 & H2 blocker, carry my epi pen with me at all times, and take a couple of other medications - I can send the whole list by regular email if you'd like. I shoot my emial address over to you on the friends section of this site.
Other than some obvious offending foods, and other items, there seems to be no real reason other than masto being masto for my current health situation. There is quite a learning curve to dealing with this illness. One day I feel great and the next day I feel like I can't quite do a thing - so it has meant for me to learn some coping skills that I think "normal people just don't have." I have also had to learn how to enjoy the good days (well that's pretty easy) and how to enjoy the bad days (not as easy - I'm feeling miserable, yet I want to make this a good day - defies all logic - yet can be done).
I was always very physically active before becoming ill. I have had days where I could be very active, and know that I will again - though I am not having them right now.
For me the tiredness that comes with this illness has come and gone and come back again. As far as the amount of pills in one day - just call my purse the traveling medicine cabinet - all I have in there that is not related to my illness is 1 tube of lipstick, a compact, my drivers license and 1 charge card - no room even for a wallet - I guess I could give up the tube of lipstick and compact - but there are some things I am not going to let this illness take away from me. I am standing firm on that point.
Sharon

Melp

Thanks everyone for sharing your stories. It's helped me understand my recent diagnosis (2008) with Indolent System Mastocytosis. I understand that most of you are in America from your treatments. It's seems to me that in Australia the specialists tend not to dabble in the pills - maybe they're not available. Every so often I seek the web for answers, mainly when I have episodes. At the moment I've constant stomach pain. The hospitals and doctors don't treat and send me home with 'take panadoles' and 'this is something you have to work out for yourself'. It's very upsetting sometimes. I'm at the moment trying to find some people in Australia so we can share ideas.

cattoy

Hi Melp,
Not sure if you're on Facebook or not but there is an Australian Support Group for Masto on Facebook. Lots of lovely people who can help you :-)

Poetessa

Hello everyone! And welcome Marcia, so sorry to hear that you are going through this!! That was me a year and a half ago and it was just a nightmare! Just like you and many others the process to get diagnosed was a disaster! I was thought to be crazy as well by most docs! Oh and everyone else too by the way!!
My symptoms started at around 2 years old and would you believe after a life time of pain, a million tests that always came back perfect, exploratory surgeries etc... they diagnosed me at 40!! It was not a fun ride but I was so thankful when they finally did diagnose me properly but silly me thought at first a few pills here and there and I'd be back to my old self again.... not so much unfortunately!! Right now for me isn't horrible though I do go through some nasty phases. Since wonderful Melp from down under told me about cutting histamine high foods out of diet I must say the gastro has been pretty good and so has everything else... a week or so...thanks Melp.... of course as I write this my stomach is actually killing me so I'm lying to your face!! LOL
My tryptase is up and down a bit but nothing too scary. The highest it was when I was first diagnosed was 182, just getting in under the 200 annoying mark. The lowest was 115 and I had a party, now I'm around 140. Though there are some on here who are WAY higher!!
For me it's my bone marrow that is worrying me. At first it was 40-50% a year and a half ago... last winter it was 70% but I'm still indolent though my masto doc is worried that smoldering is in my future. Did you do a bone marrow biopsy? They say that's the only way to truly get a proper diagnosis which is how I got mine!
In the ER with symptoms of a pulmonary embolism they saw on my CT scan that my bone marrow was abnormal so the good news was they couldn't find the P.E. and the bad news, they were sure I had Leukemia, fun day!
Oh and the first Hematologist I saw wouldn't even test me for anything, he just said I looked to good to be sick and sent me home!! 6 months later and I was at death's door shocking out constantly and couldn't move from the bone pain and gastro pain!!
Do not listen to anyone who tells you it's all in your head!!! I was labeled a drama queen for years by almost everyone around me and it drove me nuts because they couldn't see what I felt which was so scary and painful!!
Even now some are just so unsympathetic because I "look fine" so I should pretend to be fine and stop with the sick thing already!!
Try and keep people around you who understand and are comforting and make you laugh. I know, not always easy!! And if you want to vent or share or compare notes this is a wonderful place to do so.
And I go in and out of being tired, at night I could party until dawn but daytime there is much yawning!!
I think it's safe to say from most on here that it is really and up and down unpredictable illness so we really must truly appreciate the good/great days and learn to handle the bad or so so days the best we can. I know at first I was just so lost but now I have a pretty good handle on it and I don't let it rule my life anymore!! I wear the itchy, spotted histamine pants in this family!!
I can't believe facebook has a support group for masto down under!! Very cool!!
I'm here if you need to chat Marcia and wishing everyone a symptom free day!!
Leslie

Melp

Thanks Cattoy - I'm on Facebook in Australia and posted many times : ). Welcome Marcia3 to our growing group of ISMs. Feel free to vent - who knows, the littlest thing can be very helpful to someone else, mentally and physically. All the best - Mel.

Rose1932

Sharon - I'm interested in the H1 H2 inhibitor. My doctor put me on 2 Pepcid a day for that and it didn't make sense to me but I'm taking it. That and benedryl twice a day plus the Hydrea 1 a day. I couldn't take the Gleevec and more Hydrea just makes me anemic. I guess I'll find out how the pepcid is doing when he does more bloodwork the end of the month.

colleen66

Wow, I just read your post and it was me exactly!! I am 43 and right now I am at MD Anderson Cancer Center In Houston getting my final diagnosis of indolent systemic mastocytosis. Like you I have been suffering most of my life with this but just last month had a bone marrow done and it showed I had this. I thought great finally I will get some relief and answers, but because it is so rare, leave it to me to get some rare disease...nothing is ever simple..I see the DR today to find out which mutation and what % is involved..I am so tired of feeling like crap and no one understanding what I am going through..when I read your post It was like looking in a mirror..we are the same..everything you said is ME!!!!It felt good to see I am not alone and someone else understands!! I will be in touch..I have to leave to go the hospital now so, I will keep in touch..by the way, where do you live? I am in NC..Colleen

Poetessa

Hi Colleen! Does it give you some comfort knowing there are others like you going through the exact same thing? I know it did me!! I truly felt like an alien/mutant!! Come to find out that I really am a mutant with the kit816 mutation... LOL
I'm here if you need anything, I am north of you in Montreal, Quebec though when I was diagnosed I was in upstate NY but with all this going on it's such a comfort to be back home!
So nice speaking with you Colleen, this can be so difficult but ever since I found this site I feel a bit more comforted knowing there are others who understand and care, contact me anytime you need and we can compare notes!! You will have good days and crappy days, that's what we're here for!!
Healing hugs!!

katherine67

colleen66...do you mind my asking which doctor you are seeing? I live in the Houston area and I'm working on finding a doc to test my daughter for this. I don't want her to go through what Poetessa has experienced! I've gotten so much great info from here... we are seeing a dermatologist on Monday that was scheduled long before I found out about Masto. I'm bringing lots of info with me to that appt...but If she is not open to testing, I would like a backup. MD Anderson is not that far for me if it means a seeing a doc who knows about this disorder.

colleen66

Katherine, I was seen by Dr. Verstovsek. He is at MD anderson cancer hospital in the Leukemia dept. He was very good and nice to talk to...but this is a very rare disease and there isnt much they can do..mine is in my bone marrow. Is your daughters there or is it skin and allergy only? that makes a difference on who you see. There are doctors in Boston..a DR. Castells and Aikens who specialize in this also and more in the allergy and skin part. They are at Brighams womans hospital. There number is..617-732-9850. This could be an option for you..Dont give up, I will help in any way possible..I have lots of infomation, but I am new to this also..only been a month since my diagnosis, but I have been doing alot of research and have aquired lots of Dr names and options..if you want to talk e-mail me and I will give you my phone number to give you the info I have..csadler66@aol.com

jacksonba

Could you guys share what the high histamine containing foods are? I think Poetessa mentioned there are some she avoids.
Thank you,
Angela

Cocoapuff68

OMG there are 2 colleen's lol both of us with indolent systemic rut ro we in trouble now..this disease doesn't have chance against us ..lol just had to say that... ;)

donut

Hi Cocoapuff,
I was diagnosed with indolent masto 2 years ago. I'm now a grandmother and have had symptoms for years but noone knew what was wrong with me.
So in spite of the problems and the spells that I have that are sometimes terrifying,(don't know if you have them) I am still here.
Even though its a rare problem, it evidently progresses slowly.
Good luck, God bless you,
Donut

colleen66

Mt Doc just started me on a drug called gastrocrom. It is very expensive. I cried at Target when I picked up 12 days worth for 350.00. I feel like whats the use..I am not worth sending my family into deep debt to get my mast cells stableized. Is there any books on this disease out there? any help with diet? I want to give up..too tired to deal with it anymore...can someone help?????

Cocoapuff68

Hi donut,
yes I have many symptoms and I am a shocker ...it really icky!!!

Cocoapuff68

Colleen yes the gastrocrom is very expensive but if you have allergic asthma and end up on the xolair shots that is up there too...but I can say since xolair , I haven't been back in ambulance yet!! You don't have insurance? Oh I know what a hardship this is..I hope you feel better ;)

catdani

Colleen
I am so sorry you don't have insurance. Gastrocrom is a great medicine if you suffer from a lot of stomach problems. Is there someone you can contact to help with the cost of medicine? It really is worth it.
I am suppose to take it 4 times a day and don't always.....but I never miss my morning dose. If I miss my morning dose then the rest of the day is horrible so maybe at least try to do the morning dose! If I am not eating dinner at home I always take my dinner dose as well , because you never know what will set you off when you eat out.
Good Luck! It sucks that meds are so much money. I also have 2 children that have health issues and our co-pays have gone up on our insurance and even those add up quickly .

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