How does one tell apart UP from clusters of light moles or freckles?
Posted , 2 users are following.
Going in next week to talk to my doctor about possible mastocytosis. (My idea not his) I was wondering if anyone diagnosed with mastocytosis can tell me if there is any definable difference in appearance between UP skin lesions and moles?
I do have a fair number of moles on my skin, always in clusters. Clusters on each arm, both upper and lower, thighs, stomach and especially all across my back. Excepting only my back they are light brown. Hard to notice under my hairy arms. On my back they darken considerably. I have a mild case of dermatographia which is also much more pronounced and reactive on my back.
I also have chronic constant diarrhea and constipation. Constant itching everywhere, constant stuffy nose that *never* let's up for even a single day a year. I also have anxiety attacks that last for hours and better sound like anaphylaxis, than anxiety attacks. (Flushing, severe diarrhea, abdominal pain, fatigue, almost pass out, mental confusion to the point if not knowing if I'm awake or asleep for hours)
Trying to determine how I can tell if I'm being too paranoid, or on the right track to talk to my doctor about my symptoms and masto. Any help/input would be greatly appreciated!
0 likes, 10 replies
Vaxxine StridAst
Posted
Hi StridAst, So sorry you are having these issues. Your symptoms sound very much like masto symptoms. I think asking your doctor to run tests, etc is a good idea, too. Most docs look for more common things first, rule out a few horrible things, THEN start the mast cell tests.
And your question - How can we tell?
I'd love to know because I spend a lot of time looking at every spot I have, womdering the same thing. I know you can get a skin biopsy. You can also test for Darier's sign, where you scratch one. And some cases don't look like classic UP, they are called TMEP. There are several different types of spots we can get.
I wish I could be of more help. I've looked at a lot of photos on Google and it's still hard to tell the difference. However, the dermatographia is a classic masto skin symptom. It's so confusing...
StridAst Vaxxine
Posted
Agreed on its confusing
I've been wondering on the darier's sign side of things. I don't seem to get any specific swelling/hives around the spots I have, just the dermatographia on pretty much all my skin everywhere. It would be a neat party trick if it didn't itch so badly 
anything that stresses my skin much does that. Especially anything that breaks the skin. Allergy skin prick tests were useless to me as I get hives from everything. The point is, what's the difference between dermatographia and darier's sign? Just where it shows up?
I've had the sensitive skin since at least 4 years old.
Vaxxine StridAst
Posted
Google "Dermographism Urticaria Differential Diagnoses - Medscape Reference" and click the first result. Use quotes when you do the search.
Google "Medscape Reference mastocytosis" WITHOUT the quotes. The first 2 results are mastocytosis and systemic mastocytosis - these articles break down all the symptoms, subclasses and types of mast cell disease.
Dermographism Urticaria Workup
"The results from hematologic and biochemical screening tests are normal. In some patients, an increase in blood histamine levels is seen after experimental scratching.
The diagnosis of dermographism is usually made by observing the clinical response after using moderate pressure to stroke or gently scratch the skin. The site is important because areas protected from regular pressure and environmental influences (eg, the back) typically are more reactive than more exposed areas (eg, the buttocks and limbs)."
Pharmacologic Therapy
Antihistamines are the mainstay of pharmacologic therapy for dermographism urticaria.
H1 antihistamines are the drugs of choice. In some patients, a combination of 2 or more antihistamines may be required. Sedating antihistamines such as hydroxyzine can be helpful. Regular treatment may have to be continued for several months.
The addition of H2-receptor antagonists appears to result in little symptomatic benefit, although some studies have shown a further small reduction in the whealing response.[15] Physical urticarias are usually unresponsive to systemic corticosteroids.
Omalizumab, a recombinant humanized monoclonal antibody against immunoglobulin E (IgE), has been successfully used in patients with physical urticaria, including symptomatic dermographism.
Reinitiation of omalizumab treatment after relapse of disease appears to result in rapid and complete symptom control again after the first injection within the first 4 weeks, and no relevant adverse effects have been reported.
Light Therapy
Narrowband ultraviolet (UV)-B phototherapy and oral psoralen plus UV-A light therapy have both been used as treatments for symptomatic dermographism. Subjective relief of pruritus and whealing and objective reduction of wheals have been reported. However, the improvement is short-lived, and most patients relapse within 2-3 months of completing phototherapy.
StridAst Vaxxine
Posted
Vaxxine StridAst
Posted
You're welcome! <3 Those articles are VERY easy to understand, and very short. They might be an easy place to start - to get a "big picture" view of mast cells and disorders.
I do have a few suggestions to possibly help your symptoms FAST.
This is what helped me the most. when my symptoms first surfaced. I felt a huge relief of symptoms on day 2 or 3 of starting. I kept improving for months. I am still improving.
I switched to a low histamine diet. I tried to eat very fresh, low histamine foods and I avoided left-overs (histamine increases after cooking).
Google: " [[pdf]] FoodList histamine, EN, alphabetic, with categories" WITH the quotes.
The first result is a free PDF with all the histamine levels in foods and additives. It also includes things that liberate histamine in the body.
I added 1000 units of vitamin C: Clears histamine from the blood. Not every kind is good, and you might react to filler ingredients in certain ones. Look up brands that most mast cell patients use and start there.
I started taking magnesium at night (solves constipation and cramps, helps sleep).
Today, I also take H1 and H2 blockers (zantac and zyrtec) twice a day. I still avoid the common mast cell degranulation triggers and eat low histamine. Besides a little fatigue, I feel almost normal. Last January, I felt like I was dying. I can't believe what a difference diet and supplements make.
Good Luck!
StridAst
Posted
OK, got my tryptase test results. Normal. (5.2) should be a solid baseline (no attacks within a week of the blood sampling). While not exclusively ruling out masto, it does make it much less likely. MCAS is still entirely possible though from what I have read. Also seems that UP is the only real symptom that's different between mastocytosis and MCAS. (Unless there's another I am missing?)
I still think that the pattern of chronic + severe attacks fits a mast cell disorder. EspEsince the attacks seem to be triggered primarily by food, emotional stress, or intense physical exertion.
Vaxxine StridAst
Posted
Congrats on your tryptase! Mine is a 7. I do not have the KIT mutation, according to my genetic profile, but a biopsy is more accurate and will show mast cell concentration. I was diagnosed with MCAD, but I recently developed TMEP, a form of UP.
It looks like I will qualify for mastocytosis in skin (MIS), systemic mast cell activation disorder (SMAD), and monoclonal mast cell activation disorder (MMAD) - an awesome trifecta! lol. My tryptase is normal too.
UP is not the only difference between mastocytosis and MCAS/D. There are many mastos without UP. However, dermographia usually indicates mastocytosis.
We can have "mastocytosis in skin" with or without systemic involvement, or in addition to mast cell activation disorder.
Google: "Diagnostic criteria of systemic mastocytosis and all subvariants Mast Attack" for all the subclasses and requirements for that diagnosis.
StridAst
Posted
Thanks again for your helpful reply! There's so much to read on mast cell disorders.
It feels like getting a diagnosis will be a slow process. (Assuming a mast cell disorder is even what I have) the more I read the more convinced I become that this explains what's wrong with me. At the same time, I worry I'm just being a hypochondriac.
I figure I'll post my results here as I go through the testing process. That way anyone else who stumbles across this will know the end result, and I won't become yet another "well what did that guy find out?" question.
I'll also sum up my personal evidence here:
I have (confirmed and chronic)
Flushing, diarrhea, constipation, itching, migraines, extremely sensitive skin and eyes (dermatographia and an allergic type of conjunctivitis) occasionally a couple of hives and frequent minor anxiety.
Persistent conditions (suspected or otherwise)
Allergic to wasp stings since I was a small child. not honeybee, just some kind of wasp sent me to the ER when I was 7 or 8) symptoms then were severe trouble breathing with some vomiting. They told my parents it was just an asthma attack. (With vomiting? Lol. Maybe but whatever.) I don't remember much after I was stung 4 times on the chest.
Sensitivity to smells. Most harsh smells give me headaches, or nausea or asthma or else make me feel "off" accompanied frequently by significant fatigue.
Episodic symptoms, SEVERE diarrhea, nausea, anxiety, brain fog, complete and utter exhaustion, flushing, confusion, accompanied by pronounced itching. Feels more or less like my normal symptoms but 100 times worse.
Known triggers seem to be certain foods, esp citrus drinks (only happens with ones with real juice. Esp grapefruit juice) anything with onion or garlic in it. Also emotional stress, also being outside in the sun on hot summer days. (Or in a hot car in the sun on a cold winter day. Like when someone thinks the car heater needs to be on max settings for a long drive) also physical exertion. Twice without emotional stress or known food triggers I've had sudden severe symptoms after a couple hours of really physical work. (i.e. pulling up hardwood flooring with a floor chisel and heavy hammer.
Not looking for anyone to say "that sounds like a mast cell disorder" at this point I've read enough to feel confident it does, just documenting it while I go through the slow diagnosis process. My doctor is familiar with both mastocytosis and MCAS, he has 1 patient with each (really surprised me to hear)
StridAst
Posted
Waiting for the allergy and immunology clinic at the University of Utah to contact me to set up the appointment. They are the only ones in the area with any experience actually diagnosing Mast Cell disorders, so my primary care physician has referred me to them.
Annoying to wait. Today's shaping up to be another frustrating day of stronger symptoms. Been itching a lot more the past couple of days. This morning I woke up feeling quite full. Eating breakfast confirmed it's another one of "those" periods. I forgot to mention that early satiety is a symptom above.
Easy to forget since it's only occasionally this happens. Lasts anywhere from a couple weeks to a couple months. My GP did check to feel if my spleen felt enlarged when I went to see him back on the 7th, not noticeable then, though I'm aware it means literally nothing since early satiety wasn't a thing for me at the time. Meh, at least I tend to lose a few pounds every time that symptom shows up. 
Not feeling hungry does have advantages.
Vaxxine StridAst
Posted
StridAst,
You are very welcome! I've read so much info from other mast cell and histamine people that helped me find a true diagnosis too. I share your gratitude.
You are NOT a hyprchondriac. It's not our fault an accurate diagnosis hasn't been determined. You are merely the messenger here, helping doctors put together an intricate puzzle.
We are zebras, not horses. And doctors routinely look for horses first. We must allow physicians the mundane practice of elimination before arriving at a mast cell diagnosis. This is a normal chain of events: rule out the bad, settle on the rest.
You have "suspicious" symptoms and you are determined to research and find answers. In my humble opinion, what you are doing requires immense transparency and courage. And I agree: We must take our bodies into our own hands. In western medicine, doctors practice repair - not prevention. We must be our own advocates. Leave no stone unturned, and no complaint untested. You will not regret this, even if answers are slow to render.
Your testimony and 'documentation of a diagnosis journey' will no doubt help others. If you find no answers, your thread can still help others clarify their own issues. In my eyes, this makes all your efforts worth it. I have personally reached out to my mast cell blogger heros, thanking each one in my most sincere voice. Simply reading their thoughts, accounts, words, fears ... has granted my curiosity solace.
I have no cure. I cannot change my disease. But I can follow the leadership of others before me. I can read about their life struggles and triumphs. I can learn how to navigate the parameters of my abilities as a mast cell deviant. I know I am not alone, no matter the outcome.
I also have the early satiety. And yes, not feeling hungry has advantages. I feel best when I don't eat. I am working on that.
I have a question for you: Are you currently taking any medications for symptoms? Zyrtec and zantac have successfully stablized my symptoms - for now. It took about 2-3 weeks, but the difference is astounding. I almost feel normal.
Take care and THANK YOU for sharing your story. We never know when that "single comment" will spark our answer. And you, Sir, are a catalyst.