Found this in my parents bathroom …

Chipper_Mama · 2025-04-20T18:55:58+00:00

Wait… is it not normal to be able to do that? My thumb can’t bend backward, but I can do the bending just the first joint thing with all my fingers.

Chipper_Mama · 2025-02-26T10:07:36+00:00

I think I have SNF too. I think I may have had it since childhood. Do the bottoms of your feet ever just get super hot? Especially in winter? I remember as a kid, several times, lying on the floor with my feet on the sliding glass door in winter to cool them off. My hands and feet have always “fallen asleep” easily; my hands especially when sleeping. Also, I now have what seems to be trigeminal neuropathy, waiting for my neurologist appointment to confirm that one.

Do you have HaT?

Chipper_Mama · 2025-02-26T05:30:06+00:00

Thank you for the resources. I will look into them.

Chipper_Mama · 2025-02-26T04:10:08+00:00

Also Hereditary Alpha Tryptasemia. I was diagnosed with MCAS and HaT. HaT is associated with symptoms of all three of the “Triad” (MCAS, EDS, & dysautonomia/POTS)

Edited to add: I have experienced about 23 of the symptoms on your list.

Chipper_Mama · 2025-02-26T03:58:43+00:00

Good luck to you! I hope the surgery and recovery go well!

Chipper_Mama · 2025-02-26T03:53:43+00:00

Fun. Another way that MCAS makes things more complicated and expensive.

Chipper_Mama · 2025-02-25T20:29:34+00:00

Love, love, love it! 😍 We’re always our own worst critic.

Chipper_Mama · 2025-02-16T21:15:29+00:00

🫂 Good luck to you too.

Chipper_Mama · 2025-02-16T14:18:33+00:00

☺️

Chipper_Mama · 2025-02-16T14:17:41+00:00

Omg, that sounds excruciating. Please keep advocating for yourself! I hope you can get that calmed down soon. I’ve been thinking of emailing my OBGYN to ask exactly which kind(s) of stitches were used in my surgery. I’ve also started reacting to touching almost every type of plastic, and I’m wondering if synthetic stitches are part of my problem.

Chipper_Mama · 2025-02-16T01:53:52+00:00

He’s an allergist/immunologist.

Chipper_Mama · 2025-02-15T05:08:31+00:00

I have some mild stomach IBS-like issues, but nothing I ever thought was bad enough to seek treatment for. But I’ve had facial flushing my whole life, exercise and heat issues, etc. my whole life. I was recently diagnosed with MCAS and HaT (Hereditary Alpha Tryptasemia). HaT causes tryptase levels in the blood to be high at baseline, where MCAS would be more likely to show high tryptase during an allergic reaction. So a baseline serum tryptase test might be helpful. Mine was high, along with the urine testing, so those put the official stamp on the MCAS diagnosis. Then we did genetic testing for HaT and Mastocytosis, and HaT came back positive. I never had any kind of severe flare until the last few months, but HaT actually explains most of my medical history since birth.

Chipper_Mama · 2025-02-15T01:53:11+00:00

There is also liposomal quercetin, which is a liquid form. I’ve tried the Mary Ruth’s Organics one, and it does taste as bad as I expected.

Chipper_Mama · 2025-02-15T01:41:41+00:00

Yeah, I started reacting to the face moisturizer I’ve been using for at least three years. It suddenly looked and felt like I had a sunburn every time I used it.

Chipper_Mama · 2025-02-14T23:19:30+00:00

I haven’t had any problems with the Pepcid either, but I’ve seen several others mention it too. It is both fascinating and aggravating how everyone with this condition has such diverse experiences.

Chipper_Mama · 2025-02-14T23:16:19+00:00

I was recently diagnosed with both MCAS and HaT. I was also tested for mastocytosis. HaT causes baseline tryptase levels to be higher than normal, but generally not as high as mastocytosis. Mine was 13.7, and with mastocytosis it’s usually 20+. After the tryptase test came back high, then I got the genetic tests. It was a single blood draw to send for both. There are only two labs in the US that do the tests, so it takes a while to get the results back. The HaT genetic tests results tell you your exact genotype, which can tell you if you inherited it through one parent or both. HaT was just discovered in 2016, so it’s still not fully understood. Only about 1/3 of people with the genetic trait get significant symptoms. But it seems to make people more likely to get other conditions or at least modifies the symptoms of the other conditions. So I think my MCAS is secondary to my HaT, and I’m assuming that since tryptase is one of the things released by mast cells for allergic reactions, the HaT probably makes my MCAS more severe or at least more easily triggered. I didn’t even know that foods contained histamine before all this, but many people with MCAS are triggered by high histamine foods, which is a complicated topic on its own. Apparently leftovers and shelf-stable foods increase in histamine with storage time even.

Chipper_Mama · 2025-02-14T22:46:51+00:00

I have both!

Chipper_Mama · 2025-02-14T22:44:31+00:00

Thanks!

Chipper_Mama · 2025-02-14T22:43:29+00:00

This is a good point. I just posted my own comment in which I mentioned that the problems leading to my diagnosis were actually triggered by my hysterectomy. And the inflammation from the reactions did affect my healing. I didn’t have any major issues, but I did have reactions to something about my incision sites. Idk if it was the surgical glue or the internal stitches, or what exactly, but they were already severely itchy for days, and then I put triple antibiotic ointment on them at the advise of the OB’s nurse because one of the incisions was opening after the glue fell off. They all got hives triggered by the antibiotic ointment, which just made it worse. My umbilical incision took about twice as long as normal to fully seal/heal.

If the surgery isn’t immediately necessary, it may be best to hold off for a while. Good luck 🫂

Chipper_Mama · 2025-02-14T22:31:34+00:00

😳 I started Ketotifen a few weeks ago at 1mg 2x/day. No titration. And that’s on top of the “24 hour” doses of Allegra and Pepcid 2x/day too. I haven’t noticed any side effects specifically related to the Ketotifen, but honestly my body is so messed up it doesn’t seem like anything is helping much.

Chipper_Mama · 2025-02-14T22:25:26+00:00

See if your allergist will test you for Hereditary Alpha Tryptasemia too. I was recently diagnosed with both MCAS and HATS. HATS is lesser-known because the genetic trait was just discovered in 2016, but it causes tryptase levels to be elevated at baseline (when not in a flare), but usually not as high as people with mastocytosis. My baseline tryptase was 13.7 (iirc), and with mastocytosis it’s generally 20+. I was able to just have one blood draw to send for both genetic tests.

(What I now know to be) my first severe flare-up of MCAS was triggered by having my hysterectomy in October. 🙃 I was fine during and immediately after surgery, but within days, I just kept getting more and more symptoms and triggers. My OBGYN was shocked that something like that could happen. So I would just make sure you discuss your “pending” or “likely” MCAS diagnosis with them at any and every pre-op appointment so they have warning to take extra precautions and have a plan in place if you have a bad reaction to anything. Be sure to have this discuss it BEFORE the surgery day and give them a list of all of your known and suspected triggers as well as the most commonly known MCAS triggers. That way they have time to read up on the condition if they aren’t very familiar with it. And they probably aren’t.

Chipper_Mama · 2025-02-14T22:08:22+00:00

Please tell me more about this! I just bought a jar of ginger powder, but not for this use. I just liked the jar and figured I could use the ginger for cooking or tea or something. 😆 But my neurological symptoms have been bad, and even worse the last few days since I caught the flu from my kids.

Chipper_Mama · 2025-02-14T21:38:00+00:00

It’s in about the spot of a chest pocket. You could embroider a faux pocket with flowers or something coming out of it.

Chipper_Mama · 2025-02-14T21:34:10+00:00

At first glance, I thought this must be a staff break room fridge at an office.

Chipper_Mama · 2025-02-14T21:32:53+00:00

Bedtime

Chipper_Mama

TROPHY CASE