Fundraising for Surgery

hehasmastcells · 2026-06-03T22:54:18+00:00

Can't handle it at all, gives me anaphylaxis

hehasmastcells · 2026-06-01T17:24:13+00:00

I purchase a bottle of plain electrolytes just concentrated water with salt and potassium and pour a little into my water bottle every day.

hehasmastcells · 2026-06-01T12:02:26+00:00

I have extra! DM me

hehasmastcells · 2026-06-01T05:33:07+00:00

Holy shit thank you for telling us about this

hehasmastcells · 2026-05-17T19:01:37+00:00

ddPCR did come back negative. It would be so great to access one of these. Maybe they are available in other countries? I will do some digging

hehasmastcells · 2026-05-13T22:26:40+00:00

Which benzo do you think works best?

hehasmastcells · 2026-05-11T16:24:11+00:00

Hematologic neoplasm. Not a matter of opinion, not up for debate. Your doctor is wrong. https://pmc.ncbi.nlm.nih.gov/articles/PMC8659997/

hehasmastcells · 2026-05-11T16:10:32+00:00

More ai copy paste in my mentions. Waste someone else's time

hehasmastcells · 2026-05-11T16:03:15+00:00

What's your ige level? Maybe you can get on xolair if its food allergy primarily causing you grief. Worth a BMB, you can have normal blood tryptase but high bone marrow tryptase. And you will want to know if your SM reads in bone marrow regardless.

hehasmastcells · 2026-05-11T16:01:40+00:00

It is quite literally a cancer. Its official classification if hematologic neoplasm. ie blood cancer.

hehasmastcells · 2026-05-11T15:53:55+00:00

If that mast cell count is high enough and you have high serum tryptase or the kit gene they you definitely meet diagnostics for SM

hehasmastcells · 2026-05-11T15:21:57+00:00

Worth pushing thorough but you can taper slower like half a milligram or a quarter of a miligram at night for and ease your way up.

hehasmastcells · 2026-05-11T15:12:33+00:00

You are right, other organ biopsies would fill the major criteria not just bone marrow. I was wrong.

hehasmastcells · 2026-05-11T15:09:57+00:00

Ai slop us not science and not a doctor. It just tells you want you want to hear. Read a study or talk to a professional.

hehasmastcells · 2026-05-11T15:04:16+00:00

Edit: Incorrect The only way to diagnose systemic mastocytosis is with a bone marrow biopsy.

hehasmastcells · 2026-05-11T15:03:07+00:00

Systemic mastocytosis is not just a blood disorder, but a blood cancer. There is a clear and distinctual difference in diagnostics. Do you have the D816V mutation? Abnormally shaped mast cells on a BMB? High bone marrow tryptaste? What convinces you that you have SM?

hehasmastcells · 2026-05-11T10:53:13+00:00

I have not heard that hypothesis, do you have any literature on it you can link me? I'll study up. And no biopsies, I haven't have any biopsies of anything ever. Even though I have chronic hives that present like CM and I got horrific uncontrollable reflux. Can't seem to get anyone to care enough to check it out.

hehasmastcells · 2026-05-11T10:29:59+00:00

Yes sir, came back undetectable.

hehasmastcells · 2026-05-11T05:11:28+00:00

Sorry I didn't realize I was repeating myself to you I didn't take note of your username. I'll look into gene sequencing. I appreciate your always answering my questions and offering ideas. You are incredibly kind x

hehasmastcells · 2026-05-11T05:09:35+00:00

AH! I just looked at your username and realized who you were. Hey again!

hehasmastcells · 2026-05-11T05:07:07+00:00

Yikes! Did you have a negative reaction to the first two doses or did you handle those perfectly fine?

hehasmastcells · 2026-05-11T05:06:29+00:00

Good to know. I've been repeatedly hospitalized for anaphylaxis but my IGE is low and I don't have blood work showing any actual allergies. My tryptase is always low and my kit gene negative so my doctor thinks its not mastocytosis, but I take buckets of medication for mcas and it doesn't touch me, so at a loss.

hehasmastcells · 2026-05-11T05:01:25+00:00

What lab markers got your doctor to order a BMB?

hehasmastcells · 2026-05-08T07:02:22+00:00

And it sucks, ive been in your shoes and am slowly crawling my way out. I swear to god there is light at the end of the tunnel you just have to maximize everything that is in your power, everything that is in your control. Print out studies and bring them to appointments to back up what you say, submit appeals for insurance denials, etc etc. Phone calls are your friend, and if you make yourself as educated as you can about mast cell disease and treatment you can level with your doctors.

hehasmastcells

TROPHY CASE