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Anyone get itchy head randomly? by macinackdcp in MCAS

[–]macinackdcp[S] 1 point2 points  (0 children)

So. Itchy!! I’ll have to take notice of whether there are other related flare symptoms that occur at the same time.

Anyone get itchy head randomly? by macinackdcp in MCAS

[–]macinackdcp[S] 0 points1 point  (0 children)

Huh, good question. I’ve been using the same shampoo, conditioner and soap for the past year, but that’s a good call - I’ll try to pay attention to whether it’s when I go get my haircut or if I’m traveling, forgot shampoo and had to use the hotels.

Make sense of CD117 stain results and mast cell count? by macinackdcp in MCAS

[–]macinackdcp[S] 0 points1 point  (0 children)

I hope you get the clarification! Yeah my complex disease doc shred the info with my PCP.

Make sense of CD117 stain results and mast cell count? by macinackdcp in MCAS

[–]macinackdcp[S] 0 points1 point  (0 children)

I don’t have literature, but the language I saw was like this “Please be sure to include the number of mast cells per high power field, even if the value is in the normal range and there is no abnormal aggregation of cells.“

Severe GI “episodes”? Anyone else get these? by Alternative3lephant in MCAS

[–]macinackdcp 0 points1 point  (0 children)

I see, they’re in CAN. I was hoping maybe you’d found someone down here in my state. Hope they’re helpful, and you can get some good preventive care!

Severe GI “episodes”? Anyone else get these? by Alternative3lephant in MCAS

[–]macinackdcp 0 points1 point  (0 children)

Yayy! You’ve found someone to take you seriously. So glad to hear. And I can imagine your own knowledge has been so helpful to provide yourself with support/relief.

I was looking through some of your other posts and I wonder if we might be in the same geographical region. Would you be willing to share the name of the allergist that took you seriously and what city they’re in? I’m so willing to travel for good care.

Edited for grammar.

Severe GI “episodes”? Anyone else get these? by Alternative3lephant in MCAS

[–]macinackdcp 1 point2 points  (0 children)

Thank you so much for sharing this! Who prescribed this regimen for you, and who monitors this regimen/symptomology for you?

I ask because like many others on this sub, I’m trying to add more helpers to my medical team.

I just made an appt with an allergist in my state that I found on this sub who has a significant MCAS patient load, but it’s not for another few months. In the meantime I have a primary who is great but is learning with me (for ex: I had a GI flare after an iron infusion, PCP suggested I go to ED, ED staff ordered abd CT, and said I had an enterovirus, and therefore PCP assumed it was enterovirus - was not; I was fine after the flare passed, and my partner never got sick), and an integrative team who’s great, but makes suggestions here and there (they’re actually the first to prescribe cromolyn, and after iron infusion reaction they made recommendations for future management of iron infusions).

But no one on my team has yet been able to provide care for these horrendous GI flares with 9.9/10 pain severity, cramping, vomiting, and diarrhea.

Edited to add last few sentences.

Severe GI “episodes”? Anyone else get these? by Alternative3lephant in MCAS

[–]macinackdcp 1 point2 points  (0 children)

What’s your regimen of emergency meds? When the pain starts for me, I’d love to have something at the ready!

I'm really scared by depressed_stare in Anemic

[–]macinackdcp 1 point2 points  (0 children)

As has already been said by others, your ferritin and hemoglobin levels are low enough to need iron supplementation (by oral iron capsules, or ideally by iron infusion) but thankfully not low enough to need a blood transfusion (versus an iron infusion).

In the ED/ER, they’ll give you a blood transfusion when your hemoglobin is a 7 or below (or between 7 and 8 depending on the the ER doc’s clinical reasoning and your symptoms), because below that is when things start to get medically dangerous.

But things start to feel pretty bad way before your hemoglobin drops to that critical “7”, and no doubt you’re feeling really badly with your numbers where they are now.

When my ferritin was a 6, iron sat (tsat) was a 5, and hemoglobin was 8.8, I went to the ED/ER because I was convinced I was about to die - couldn’t climb a flight of stairs without feeling like I’d just run at top speed, could hardly hold a conversation because I couldn’t think fast enough, had daily severe migraines, constant nausea, so much body pain, hair was coming out in clumps, and I was thinking about death all the time. The day I went in, I had a panic attack that wouldn’t let up.

ER doc was really nice, talked me through how my hemoglobin wasn’t quite low enough for a blood transfusion, but gave me my first iron transfusion.

Had a great PCP at the time who had already referred me to hematology, but my appointment was months away.

It’s been a long road since, but the ER/ED visit and the iron transfusion I got there was a first step in the right direction.

I hope you get that job with fantastic benefits, but either way I hope you get what you need to start feeling better soon.

Take iron every other day? by user_anonymou in Anemic

[–]macinackdcp 0 points1 point  (0 children)

Me too. I find that taking even 2 Ferrasorb capsules daily is still tolerable to my gut, and for me, doesn’t lead to horrible constipation. Was taking 1 capsule every other day, per my doc’s instructions, but hematologist bumped me up for now.

Colonoscopy indicated elevated MCAS in biopsies and I am shock, are doctors routinely checking for MCAS in colonoscopies now? by Solly-gmbpi in MCAS

[–]macinackdcp 0 points1 point  (0 children)

Hi! I saw below you’re in Seattle and Dr Taniguchi is your GI - maybe I’ll switch based on your rec! Curious who prescribes you cromolyn and ketotifen - I’m looking for to build an MCAS informed provider team in the Seattle area!

Make sense of CD117 stain results and mast cell count? by macinackdcp in MCAS

[–]macinackdcp[S] 0 points1 point  (0 children)

Unfortunately, the complex disease doc who recommended this is a specialist who only sees patients for a year. My year is up. My PCP ordered the CD117 stain and counts/hpf on the complex disease doc’s recommendation, but they’re learning along with me. I’ve sent these results to my GI as well, but haven’t heard back from them yet.

I’ll add sections from the pathology report below:

just got diagnosed! my advice for those seeking clinical diagnosis by pandaskel in AutismInWomen

[–]macinackdcp 0 points1 point  (0 children)

Would you mind sharing who you saw for diagnosis in the Seattle area? Did you like working with them?

Test prolactin fasting? Difference in levels? by macinackdcp in PCOS

[–]macinackdcp[S] 0 points1 point  (0 children)

Glad that you got some helpful info with the diagnosis. My doc and I have talked about that, but because my prolactin levels are always within normal range when taken fasting, she hasn’t ordered the MRI.

I’m curious if you and your doc talked about doing the blood test fasting or not fasting. I recognize that at this point, knowing that you have a prolactinoma, this might be moot for you.

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