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Can internal symptoms come from cutaneous (skin) mastocytosis? (Read 7949 times)
BlueSkies
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Can internal symptoms come from cutaneous (skin) mastocytosis?
01/06/13 at 06:59:43
 
Hi all,

I have a question about whether or not cutaneous mastocytosis can produce internal symptoms...

I've been diagnosed with TMEP mastocytosis, which is one of the cutaneous (skin) versions.   However, I am wondering if I could have systemic mastocytosis because many of my reactions are internal, not just external.  

When I have a skin reaction, I quickly progress to nausea, then brain fog, then feeling faint, with fatigue & weakness increasing through out the process.   Sometimes my stomach reacts first.   Like, when a piece of clothing is triggering me, I may get nauseated before my skin starts to burn.

Can mastocytosis that is only in the skin cause these internal reactions?    They can all happen within seconds of each other.

By the way, my skin mastocytosis was diagnosed from too many mast cells in my skin.    I would have thought that the other reactions would also be related to too many mast cells around those organs.     But, I am still learning about all of this.

Thanks!
BlueSkies
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Joan
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Re: Can internal symptoms come from cutaneous (skin) mastocytosis?
Reply #1 - 01/06/13 at 20:39:20
 
Yes, you can have systemic symptoms from CM.  The mast cells in your skin can degranulate and send mediators through your body, causing systemic symptoms.  Antihistamines should be helpful.  If you're not able to control them on the meds and/or dosages you're taking now, ask your doctor about increasing the doses or frequency.
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mikev
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Re: Can internal symptoms come from cutaneous (skin) mastocytosis?
Reply #2 - 01/07/13 at 01:55:33
 
Blue:
I have SM with skin sensitivity & I can say for a fact your answer is yes. I have stomach issues that come & go but always have dual action tums at the ready, even though taking zantac 2 times a day. Mine don't seem directly tied though. My skin hurts at some degree all the time & don't notice an increase when stomach starts to act up.
MikeV
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BlueSkies
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Re: Can internal symptoms come from cutaneous (skin) mastocytosis?
Reply #3 - 01/07/13 at 15:29:09
 
Joan & Mike,

Thank you both for replying.   Everything I learn is helping me cope better.

Joan, that makes sense about the release from the skin effecting the whole body.   Thanks for explaining it.   And, thanks for the medicine suggestion, we're (the dr and I) currently experimenting with dosages, and which meds I can tolerate.   We've made some progress, but we're still pretty early on in the process.   This forum keeps me encouraged that the meds will help.

Mike - I'm sorry your skin is hurting all the time.   Does cutting out certain foods help any?    I found that avoiding citrus, tomatoes, and some other foods reduced the level of burn I experience.   Also, a LOT of rest over several days, will bring it down some.   However, it rarely goes completely away.   But, if a piece of clothing makes me burn - it will also cause a whole cascade of reactions.   On the other hand, if it's cold air, or friction making me burn, I don't get the rest of the reactions.   Strange.

Thanks again,
BlueSkies
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mikev
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Re: Can internal symptoms come from cutaneous (skin) mastocytosis?
Reply #4 - 01/08/13 at 08:30:34
 
Blue:
Through my over 7yr, I haven't found for sure any food that makes my skin pain worst. Usually stress or my body handling some kind of bug makes it worst. With my skin so sensitive especially in my arms & legs, I wear silk under microfiber when possible to both lessen the weight on my skin & keep friction to a minimum. I moisturize a fair amount to make sure my skin isn't dry. Cold doesn't cause me to react just to hurt more. Heat on other hand  I can handle better, just have to make sure to watch amount so don't get anything close to a sunburn. All this shows is how different we all are with our version of masto. Ketitofen has helped me more than gastrocrom, but pain or discomfort is always there is some degree. Just the way it is for me.
Good luck,
MikeV
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BlueSkies
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Re: Can internal symptoms come from cutaneous (skin) mastocytosis?
Reply #5 - 01/09/13 at 13:09:53
 
Thanks for your thoughts, Mike.   It is amazing how varied this gets, and yet at the same being on this forum it feels like things finally make sense.   After all, how many people do you think I have ever run into whose skin burns?   It's like a dose of sanity to know other people have similar symptoms!   For similar crazy triggers.

I'm still at the beginning of experimenting with the meds, but maybe they will help yet.

BlueSkies
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mikev
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Re: Can internal symptoms come from cutaneous (skin) mastocytosis?
Reply #6 - 01/10/13 at 08:13:03
 
Blue:
The toughest thing in the whole trial & error with meds is to give your meds a chance to work. & also work yourself up to the recommended dosages slowly. It's so easy to have a string of bad days like I had this week, probably my body killing flu bugs, & blame it on a med.
I've been on same meds now a full year & yet this week I caught myself questioning them & not remembering that they have made my symptoms more tolerable this year. You want so much to be better & get the old you back. You would have thought that I would have accepted the new me by now but I guess I never will.
Good luck
MikeV
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