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Mastocytoma ? (Read 5160 times)
iamnotalone
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Mastocytoma ?
09/25/11 at 13:55:19
 
Hey All;

I've had this weird round hard bump under my knuckle; it appeared a few weeks ago after a "TMEPisode". It hurts along with my hands when I get an attack. My son says he had a nurse friend look it up n they think its a mastocytoma... Does this sound familiar to anyone ? I was planning on seeing my allergist this week; guess Ill be calling in the morning. Just nervous Embarrassed
lori
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daowebe
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Re: Mastocytoma ?
Reply #1 - 09/25/11 at 14:58:23
 
Hi Lori;
That is another name for Urticaria pigmentosa and they are benign .  If you've already been diagnosed with masto than this probably won't change anything for you as it's just another one of the many symptoms.  I have these spots on me and they act up from time to time and tend to be itchy.  Some people with masto have many of them some have none.  I only have a few but the pictures on this website look exactly like mine.  Compared to the rest of my symptoms this one is just annoying.  I find that it gets darker when I'm having issues so I use it as a gauge.  I found a site that has some pictures.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002437/

I know it's hard but try not to worry.  
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Joan
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Re: Mastocytoma ?
Reply #2 - 09/25/11 at 17:00:03
 
  It could be a mastocytoma, or it could be inflammation of the joint from the TMEP episode you had.  I couldn't tell from the description if it was on the surface or inside.  Good idea to have it checked out.  If it's a single mastocytoma, it's a clump of mast cells, and usually they are surgically removed, requiring pre-medication with antihistamines and prednisone to make sure the patient doesn't react if the mast cells decide to let loose with mediators during the surgery.  I don't think this is considered major surgery, and most often they aren't malignant.
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Re: Mastocytoma ?
Reply #3 - 09/26/11 at 03:01:42
 
Joan;
Thanks for the insight/advice. Its under the skin on my knuckle joint.
I have an appt. this afternoon with my allergist. My kids have me all
worried about it Roll Eyes, so Im trying not to freak out too. I need a shirt that says "dont talk to me til Ive had my xanax" ! I will post anything useful I find out = )
Lori
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Lisa
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Re: Mastocytoma ?
Reply #4 - 09/27/11 at 00:29:32
 
It could also be a mast cell hyperplasia, which is nothing more than a gathering of normal mast cells causing a situation of mere inflammation.   Either way, itīs NOT cancerous, so nothing to be horrendously worried about!!

However, it may be something else!!!  So you must get it checked out.


If it is a mastocytoma, which is rather unlikely since this usually appears with children and in this form, any kind of rubbing or running hot water or scratching is going to be dangerous for the mere manipulation of that mastocytoma will automatically dump tons of MC mediators into your blood stream.  This is one way you can know if it is a mastocytoma.  As Joan said, itīs a concentration of mast cells, but in this case itīs totally different from a MC hyperplasia in that a hyperplasia is a gathering of NORMAL mast cells and although they will react like any other NORMAL mast cell, by rubbing it or putting hot water, etc on it, you will NOT go into anaphylaxis due to the massive dumping of mediators.  With a mastocytoma YOU WILL!!  That is because a mastocytoma is a clumping of NEOPLASTIC mast cells and because they do not behave normally, they will then do a massive dump of their granules and thus put the patient into massive reacting as a result.

So, if youīve been moving your hand around, having warm or hot water pouring over it, washing dishes, etc., and nothing has happened, then RELAX!!!! IT IS NOT A MASTOCYTOMA!!   It is something else then.  

Like I said, not everything can be blamed on masto and this needs to be investigated and perhaps biopsied, but if youīre not doing massive reacting just because youīve been rubbing and using your hand with hot water and the like, then YOU DO NOT HAVE A MASTOCYTOMA! The chances of it are HIGHLY unlikely!

I hope this helps!

Lisa
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Donīt forget, there is so much more to life than being sick!
 
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iamnotalone
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Re: Mastocytoma ?
Reply #5 - 09/27/11 at 11:46:56
 
Thanks both Lisa, & Joan;
And yes- your replies did help = )
The dr. said it was most likely from the inflammation-like a cyst on the ligaments. (good news) Meanwhile, my hubby's health ins. dropped me cuz I had a "pre-exsisting condition! (bad news) Doctor wants me to have a BMB because of my body aches, n had 4 "episodes" this month
already. I can hardly hold my grandson, it hurts so bad. Sad I walk like an OLD woman, been getting "hot flashes" like none other- n HE says "lets Hope its hot flashes" ??? He also thinks part of the reason Im having so
many flares is Ragweed season Huh ? Anyway; I talked to an angel at hubby's health ins. co.- she's gonna help me straighten it out-basically system error ,n they need proof I was covered, up til they took over. (GOOD NEWS) Smiley
Now Lisa, I know you're not a Dr.; } but have you ever heard of anyone getting allergy shots with any forms of Masto ? Just wondered if there's any precedent, n if it helped/hurt...
thanks again- sooo lucky to have found you all <3
lori
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Lisa
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Re: Mastocytoma ?
Reply #6 - 09/27/11 at 15:39:03
 
Hi Lori!!

I'm glad that your doctor figured it out.   Being a cyst, however, that could trigger you being that cysts are caused by an infection process.  Your doctor should deal with this ASAP so as to aviod it triggering you.

As to the IgE allergy shots.  This is controversial but if you were to speak with Dr. Castells she would say to do it, yes.  I'm not quite certain as to the workings but since they help to dessensitize you, it should help to keep you from triggering so much in that you have a double whammy situation of having your IgE antibodies to things trigger your MCs and that would thus in turn also trigger the masto.  

Yet, I honestly think that this is something that is worth writing to Dr. Castells herself and asking about it.

Lisa
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Re: Allergy shots
Reply #7 - 09/27/11 at 18:47:17
 
I take allergy shots.  Of course, it will only work on true allergies and not on things that are only mast cell triggers.  I've found it helps me, especially during pollen seasons, but I have to be very careful to monitor my symptoms.  If I'm too symptomatic, I skip the shot and wait until I'm feeling better.  I've had an occasional anaphylactic reaction to a shot, but mainly when I haven't been well at the same time.

I just wrote some guidelines on another post that I use regarding shot safety.  A big one that I forgot to put in is waiting the full amount of time before leaving the doctor's office.

I tend to pre-medicate with an extra H1 antihistamine before a shot.
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Joan
 
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Lisa
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Re: Mastocytoma ?
Reply #8 - 09/29/11 at 15:01:37
 
Youīre so smart Joan!!   What a really smart ideia!!!
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Re: Mastocytoma ?
Reply #9 - 10/06/11 at 11:04:33
 
Thank you so much for posting this and this thread!!!

I thought I was nuts (I think the doctors already think it.)  Whenever I'm having a bad bout with my mastocytic enterocolitis (or IC, or non-allergic rhinitis), I get strange lumps around my knuckles and in my palms. Then, followed by a severe, sharp ache.  

Had a nurse try to tell me the first one was a bug bite.   Cheesy

The only way I've kept them away lately is with budesonide that I have prescribed for bowel problems.  

How did the rest of you 'treat' these things?

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