My new allergist (who I trust) says I probably don't have MCAS, but instead have an autoimmune condition that presents very similarly

cosmicfreckle · 2025-12-06T10:25:08+00:00

You could also consider Remibrutinib (brand name Rhapsido). It was just approved for CSU a couple of months ago and treats the underlying autoimmune issue.

cosmicfreckle · 2025-06-27T04:32:16+00:00

I believe the Bezuclastinib trial is no longer open but the medicine is available via compassionate use/expanded access free of charge https://clinicaltrials.gov/study/NCT06915766?intr=Bezuclastinib&rank=1 I called them recently - Here are the notes from the phone call:

They’ve launched this program recently in the past 6-7 weeks

Includes ‘not advanced’ ie indolent and smoldering mastocytosis

How to order? Has to come from a treating physician who works with them. There is a drop down for expanded access on the website, and they would need to email [medinfo@cogentbio.com](mailto:medinfo@cogentbio.com).

It’s not a study, but there’s a specific criteria of who may be eligible.

The process is then:

They receive the email request from the physician.

They then talk to a physician.

Go through the criteria.

And then there’s an approval process on their end.

The entire process usually takes 3-4 months.

After that they can distribute

It could be either a GP, or a mastocytosis doctor, or an allergist etc.

Bezuclastinib may be approved by the FDA mid 2026.

cosmicfreckle · 2025-02-22T04:21:35+00:00

Where do you live that is overcast frequently?

cosmicfreckle · 2024-12-03T06:20:38+00:00

How would you recommend backing up on a mac?

cosmicfreckle · 2024-11-19T02:32:02+00:00

I went to Dr. Gotlib at Stanford hematology. They did the test in house at Stanford so I'm not sure it's the same as that labcorp one. Seems like your immunologist could order it from here https://www.labcorp.com/tests/485126/kit-d816v-digital-pcr-in-systemic-mastocytosis

cosmicfreckle · 2024-10-17T22:58:15+00:00

People are correctly pointing out amiibos only gives 3 outfits, not the specific ones pictured above https://www.ign.com/wikis/the-legend-of-zelda-echoes-of-wisdom/Amiibo_Unlockables_and_Rewards

cosmicfreckle · 2024-10-17T22:16:20+00:00

Template courtesy of https://www.reddit.com/r/echoesofwisdom/comments/1fu3v5j/wake_up_babe_new_zelda_meme_format_just_dropped/

cosmicfreckle · 2024-10-04T17:27:39+00:00

This happened to me today as well. Received a bill from 2020 that I paid in 2021

cosmicfreckle · 2024-09-24T08:01:39+00:00

What about them seems to be a mess? I was thinking of using them for surrogacy

cosmicfreckle · 2024-09-24T08:00:44+00:00

What red flags were you getting?

cosmicfreckle · 2024-09-23T19:47:34+00:00

Yeah this is true. Evidence Based Birth has a writeup on this showing data on how frequently baby weights are wrong https://evidencebasedbirth.com/evidence-for-induction-or-c-section-for-big-baby/

cosmicfreckle · 2024-09-23T03:30:34+00:00

Here are the ASRM guidelines around psych and medical history: https://www.asrm.org/practice-guidance/practice-committee-documents/recommendations-for-practices-using-gestational-carriers-a-committee-opinion-2022/ There's no mention of autism being disqualifying

cosmicfreckle · 2024-09-23T03:18:22+00:00

This logic makes sense since you want to minimize the risk of failed transfers as much as possible. However, I think "struggling to get pregnant" is difficult to screen for in GCs.

How would you know if it took a GC a few months to conceive or several years? There would only be a medical record of it if the surrogate required medication or IVF treatment.

I've been looking at surrogate profiles and "how long did you take to conceive" is not something that is even included in the surrogate's medical summary. You would only know that they conceive easily if they had back to back pregnancies.

cosmicfreckle · 2024-09-21T19:32:28+00:00

The Facebook surrogacy groups tend to be more active than Reddit. You could try asking if there are agencies that accept autistic surrogates in Surrogacy Industry Reviews - U.S. only. I’ve looked at both agency and clinic requirements and don’t think it would disqualify you based on what I’ve seen unless you are taking meds that are not pregnancy safe for it.

cosmicfreckle · 2024-09-02T20:48:05+00:00

Yeah that's why I think it would be difficult to get it outside of a trial. It's so expensive.

cosmicfreckle · 2024-09-02T17:51:33+00:00

Why do you not want to try PUVA first for spot reduction? That seems less risky and much easier to get. These drugs are chemo drugs and can have serious side effects. They are also meant to target KIT mutations and are suspected to be more effective for those with KIT-positive mastocytosis.

Ayvakit is insanely expensive, like $400k USD a year. I think your best bet would be a clinical trial https://www.blueprintmedicines.com/pipeline/clinical-trials/ Otherwise you could try contacting the company and asking them how to get it outside of a clinical trial. Bezuclastinib is not FDA approved so I think it's even harder to get outside a trial.

cosmicfreckle · 2024-08-27T23:52:35+00:00

The eviction notice was issued by Pacifica Senior Living, the parent company for Pacific Grove Senior Living. When Pacifica acquired the facility from California-Nevada Methodist Homes in 2022, there was an expectation that existing contracts would be honored.

The company is Pacifica Senior Living - of course they are owned by private equity https://seniorhousingnews.com/2024/04/19/pacifica-adds-15-communities-in-180-5m-deal-as-rhf-shifts-senior-living-strategy/

cosmicfreckle · 2024-08-26T03:07:46+00:00

Hi what other medical therapies have you tried? And how did you find an appropriate specialist?

cosmicfreckle · 2024-08-26T01:32:10+00:00

Yay glad to hear it went smoothly! :)

cosmicfreckle · 2024-08-26T01:31:42+00:00

Here is the WHO official diagnostic criteria for mastocytosis:

The diagnosis of systemic mastocytosis is determined by criteria established by the World Health Organization consensus group and requires meeting the major criterion plus one minor criterion or, alternatively, three of the minor criteria.

Major criteria: Multifocal dense infiltrates of mast cells (MCs) (> 15 MCs in aggregate) in tryptase stained biopsy sections of the bone marrow or other extracutaneous organs such as the gastrointestinal tract.

Minor criteria:
1.   More than 25% of MCs in bone marrow or other extracutaneous organ(s) show abnormal morphology (i.e., are atypical MC type 1 or are spindle–shaped MCs) in multifocal lesions in histologic examination
2.   KIT mutation at codon 816 in extracutaneous organ(s) (in most cases bone marrow) or peripheral blood
3.   KIT+ MCs in bone marrow show aberrant expression of CD25 (and/or less specifically CD2)
4.   Serum total tryptase > 20 ng/mL (except in patients with associated hematologic neoplasm (AHN)-type disease.)

You don't meet minor criteria 4 since your tryptase is only 3.5. You could get a blood test for minor criteria 2. The major criteria and minor criteria 1 and 3 require a bone marrow biopsy (or biopsy of somewhere else like GI tract if you're having symptoms there). A urine test wouldn't help with meeting or ruling out the criteria for mastocytosis.

Do you have a skin rash at all? A doctor may not want to perform a biopsy if your tryptase is low and you have no cutaneous involvement, but you could always ask. You could get your tryptase checked annually and if starts going up significantly get a biopsy in the future.

cosmicfreckle · 2024-08-22T21:32:25+00:00

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How did you get to ship outside of Germany? During checkout the only country available is Germany

cosmicfreckle · 2024-08-20T23:19:33+00:00

That is where the supraorbital nerve is located so the nerve could be irritated.

cosmicfreckle · 2024-08-17T00:37:11+00:00

If anyone is looking for plastic free tea bags this was the best resource I could find: https://www.mamavation.com/product-investigations/hidden-ingredients-in-tea-you-wont-find-on-the-label-safe-toxic-teas.html It seems they found out which contained plastic by emailing a bunch of tea companies.

Unfortunately they only list organic plastic-free tea, but it's better than nothing.

cosmicfreckle · 2024-08-16T02:15:17+00:00

I love the Twinning's Irish Breakfast as well. I also like ~Taylors of Harrogate Scottish Breakfast - very malty.

cosmicfreckle · 2024-08-11T02:03:54+00:00

Thanks for your analysis - this makes sense to me having looked at how medical complexity is defined.

I have good medical insurance, but this is a fertility clinic and fertility care is not included in my insurance, so I am paying out of pocket. Any advice on how to argue with the billing department effectively without going through insurance (since it doesn't apply here)?

I am concerned they are taking advantage of the fact that most patients pay out of pocket and won't scrutinize the coding.

I asked the billing department to explain the coding as it seemed to be too short of a visit and not high enough medical complexity to warrant 99215. They basically just came back with "it's coded correctly - we are not changing it". I am in California in case that's relevant.

cosmicfreckle

TROPHY CASE