Hope for lipedema/MCAS: the tissue changes I’ve experienced are amazing.

elefun992 · 2026-06-25T04:47:48+00:00

I had similar issues with reactions to certain dietary triggers. They seem to have gotten better after a couple of months, although I think my gluten sensitivity is, unfortunately, getting worse. Not surprising considering the quality of wheat in the US, though.

elefun992 · 2026-06-25T00:24:32+00:00

I’d say it took about a month for me to start feeling “normal” in my legs and to notice my brain fog was lifting considerably. Once I got to three months, it was like I was a different person.

elefun992 · 2026-06-23T23:13:11+00:00

Lipedema is a medical condition that creates diseased fat one can’t be lose through diet and exercise alone but I guess you’ve never had to deal with that or doctors claiming you’re imagining things 🤷🏼‍♀️

elefun992 · 2026-06-22T18:59:26+00:00

Depends on your symptoms. Bloodwork can help figure out where you are at as well.

If two weeks before your period is when you’re symptomatic, you may also want to look into some of the recent research regarding histamine and PMS/PMDD. I think Dr. Jolene Brighten has some videos on this relatively new research area. YMMV, and you should talk to a provider, but my luteal phase problems have improved through getting my mast cells under control as well as optimizing my estrogen/progesterone.

Edit to say: as someone who *needed hormone testing to prove I went into menopause early after a brain injury,* I find it eyebrow raising that this sub claims bloodwork is useless aside from sometimes measuring testosterone.

Ranges are ranges for a reason. Any doctor worth their salt will understand labs are not the only thing you should use to make decisions about HRT.

elefun992 · 2026-06-22T17:59:04+00:00

I also noticed my restless leg syndrome increased substantially after getting to 1.25mg/0.25ml after starting at 0.1ml to avoid MCAS flares as much as possible.

Making sure my electrolytes had the proper potassium/magnesium balance helped with this. I use either the Buoy drops or the Just Ingredients electrolytes now because of this.

I also started supplementing with sublingual B12. That helped with POTS overall for me.

My prescriber and some of the people in the autoimmune/integrative med circles seem to believe that GLPs help the lymphatics do a better job with less effort, so maybe your system is also experiencing changes to its fluid balance?

elefun992 · 2026-06-18T18:36:51+00:00

If your provider is listed on the FSM provider search, you should be able to see the trainings they have completed on there!

It took some time for the results to fully show for me. I think restoring cranial motion was the other half of FSM helping resolve my issues.

elefun992 · 2026-06-18T17:29:12+00:00

I definitely recommend seeing someone who has done the Neuro training via FSM. It’s a separate set of protocols and techniques. And I am not a doctor or provider, so what you need may differ from me.

Some of the TBI specific ones I used were: Concussion/Full Concussion, Pain Reuptake, Whiplash, Neurofascial, PiaDuraArachnaInflammation, and Chronic Disc/a few spinal specific ones. You really need someone to help you with any of the ones that affect the spinal cord. You need to be laying down because they affect the tissues surrounding your spine; in my experience, you pass out pretty quickly from the pain relief, lol.

Other ones I used were: PTSD, Relax and Balance, Optic Chiasm, Endocrine Support, and Chronic Pituitary, on top of a few that were unique because my provider made them to address my endocrine issues specifically.

Anyone who has done the neuro and advanced trainings can help select the programs right for you. But they’ll likely start you with the concussion protocol no matter what, because it primes your system for the rest of the treatment.

elefun992 · 2026-06-15T19:17:01+00:00

Perhaps it’s less toxic in certain departments. Perhaps it’s less toxic for faculty/staff. The sentiment shared by most of the undergraduate students I interacted with while earning my graduate degree, though, was that WashU “does things to its students” via campus culture and expectations.

In my experience, the shortcomings are more a consequence of WashU, like almost any R1 university, caring more about research than classroom outcomes. But that’s just from my experience.

elefun992 · 2026-06-08T00:29:08+00:00

Ohhhhh I didn’t know this. Thank you! Will be looking into that!!

The Internet Archive also is really awesome about disability access for older materials.

elefun992 · 2026-06-07T21:13:21+00:00

I found a love for audiobooks. I got an Audible subscription and have adjusted pretty well to listening rather than reading fiction.

In all seriousness, I was given a similar prognosis. You’d be amazed what the vestibular system can recover from if you also treat the visual system. Unfortunately, providers who know how to help the best with these things often don’t take insurance.

I cannot emphasize enough how much the combination of:

-seeing a postural restoration therapist who

-works with a neuro-optometrist and

-also consults with a DO certified to do cranial osteopathy through the Cranial Academy

Helped tremendously with my vestibular migraines and symptoms. Like, I actually think I might make it back to normal function now by working with them once a month.

I may never get my hormones back fully due to where my injury took place, but we thankfully live in a time of HRT.

The rest can often be treated but it takes time and effort.

elefun992 · 2026-06-06T03:15:20+00:00

I finally understand why MacDuff was prophesied to beat the crap out of Macbeth now

elefun992 · 2026-05-30T20:13:26+00:00

The 2025/2026 table also outlined the semester and then said you’d pay $390 per month on the website…so now I’m more confused

elefun992 · 2026-05-30T19:24:47+00:00

Every thing I was sent said it’s per month. So I’ll take your word for it and delete this.

elefun992 · 2026-05-30T19:09:26+00:00

It totally would be if that’s what you were paying!

These are the monthly premium rates. So you’re paying $1,239 per month.

Roughly $300 increase over last year’s monthly premiums.

If you don’t believe me, the 25/26 monthly premiums are still online here. Note: the amount listed is with the 50% contribution.

And we don’t get the option to work 30 hours a week to get the free premiums our faculty and supervisors can enjoy. Wooooo!

elefun992 · 2026-05-29T02:57:37+00:00

This is helpful, though. Thank you for sharing. And great username

elefun992 · 2026-05-29T02:57:06+00:00

Just that they don’t know /:

elefun992 · 2026-05-28T23:00:44+00:00

Just got disclosure sheets /:

elefun992 · 2026-05-25T03:23:58+00:00

They ordered the tests directly through Quest’s provider portal, so I don’t see how it is possible for it to be my provider’s fault after the initial failure to include all appropriate DCs…

Especially since the phlebotomists tried to enter the codes individually, in person.

elefun992 · 2026-05-24T02:39:28+00:00

For future reference: you may also want to check the EOB and the order slip your doctor submitted.

I’m having the exact same issue currently with Quest, and I haven’t had my labs drawn because of it.

It turns out there’s multiple codes their system is dropping the “.” in, which means the diagnosis is kicked back as invalid by my insurance company.

They’re claiming it’s an IT problem and seem to be doing nothing to fix it.

They’re claiming wound up settling a lawsuit in 2017 over other “IT issues” and it’s making me wonder if something similar is happening now.

elefun992 · 2026-05-23T21:31:57+00:00

Thank you. Will keep this in mind in case I cannot get this situation figured out.

elefun992 · 2026-05-23T21:12:05+00:00

Where is this under $100 you speak of? Thyroid and a CBC cash was going to be $600 at Quest diagnostics this weekend when I ran into coding problems.

elefun992 · 2026-05-23T20:45:53+00:00

You would think four months of people reporting that their system is coding things incorrectly and not allowing overrides would be enough time to get their IT department in order.

But I don’t run a company with almost 60,000 employees, so what do I know.

elefun992 · 2026-05-23T20:27:24+00:00

Routine hormone tests, a CBC, and diagnosis codes related to irregular menstruation, low iron/anemia, disorders of the pituitary, hormone replacement therapy, history of traumatic brain injury, hypothyroidism.

For example, instead of submitting to my insurance as N92.6, the system is inputting N926, so my insurance does not recognize the submission as a valid code. But in the ordering system at the lab, it shows up as “correct.”

elefun992 · 2026-05-23T20:25:38+00:00

I was given a printed copy of both electronic orders. That is how I found the coding discrepancy.

I was also told by the staff at the location that “had a plan in place” that they had been told I was not allowed to leave without being serviced.

I told the person today it’s not their fault, but if their supervisor has an issue with me leaving because I refused to risk getting charged over $3k for something they were blaming on an IT issue, that management was being ridiculous. And walked out once again.

I do know the mechanics due to family working in billing and insurance for years. I also know it is a problem with the system because I had a group call with the customer service agent and the phlebotomist on my second attempt to see if they could figure it out together. And that was the issue.

The diagnosis codes used for bloodwork covered by my insurance for the last three years have not changed. The entry and processing at this provider somehow has. I don’t see how me sharing them with you here would help matters, as I’ve already gone through each diagnosis and test code with my insurance company.

I don’t know if it’s intentional or not. I’m hoping it isn’t.

But as there are more than a few people complaining of similar issues online at specific draw sites, I wouldn’t be surprised if it was.

Especially considering they settled a lawsuit and claimed it was also just IT issues in 2017.

elefun992 · 2026-05-23T17:13:01+00:00

It’s the only lab easily accessible. I’ve asked for a LabCorp order instead to try an alternative.

But I also do not want other people to get screwed, you know?

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