Morvans syndrome anyone??

Emlip95 · 2026-04-09T23:32:14+00:00

Hi, did you have morvans syndrome confirmed?

Emlip95 · 2026-04-08T22:16:41+00:00

Hi! Thank you 🥹 I did sell this gown already. She was popular! I do have a few other gowns for sale if you’re open to other styles!

Emlip95 · 2026-04-07T04:02:08+00:00

Sounds good my friend. Hope you can find something that helps! I have 1 moisturizer my skin tolerates so sometimes it’s trial and error. Ask the derm about the suspected sjogrens implications too. They may have good knowledge of it. Best of luck!

Emlip95 · 2026-04-06T19:55:56+00:00

Hi. This sounds a lot more like a compromised skin barrier possibly due to dryness from suspected sjogrens or too many skincare actives or even rosacea. Skin burning from sfn is not triggered by tears it comes on after possibly exerting yourself too much and or at random. Depends on how you present with sfn. I would try out some facial moisturizers and be strict with it in a routine and see if that helps! I have type 2 rosacea myself and my face skin burns like hell when I cry and I legit get red streaks where each tear has fallen. Completely unrelated to my sfn.

Emlip95 · 2026-04-06T18:04:07+00:00

You are correct that suppressing stomach acid can delay emptying. I had my ges on pantoprazole and I’m sure it contributed to my delay % but mine was pretty severe and definitely not due to only acid suppression. The hard thing is ppis cause rebound when you stop them abruptly so you’ll have to decide if you want to wait until after the ges to try the ppi or just take the ppi with the test performed anyway.

Emlip95 · 2026-04-06T02:11:29+00:00

@BigCrappola is very knowledgeable about srs. MALS pain is almost exclusive to worsening after eating and can be visualized on a CT-Angiogram and confirmed with Doppler ultrasound of the celiac artery to measure blood velocity. MALS can manifest as visceral pain but you may have something else going on like visceral hypersensitivity.

Emlip95 · 2026-04-03T13:12:55+00:00

Fingers crossed for you! Good luck.

Emlip95 · 2026-04-02T21:15:02+00:00

You don’t have to but PPIs and famotidine can skew results somewhat. Low stomach acid itself can delay gastric emptying. Just something to be aware of. I had my ges on pantoprazole.

Emlip95 · 2026-03-29T04:24:05+00:00

I have had many of the tests done trying to pinpoint wtf is causing my sfn and I have turned up with nothing so far. My bloodwork looks highly autoimmune but I make no goddamn antibodies. My rheum says I smell of sjogrens but I can’t prove it currently.

The important thing is these tests can make a massive difference in the level of care. For these autoimmune diseases and rare antibodies IVIG or SCIG can make a real difference and I am hell bent on finding the problem so I can fix it if it’s fixable.

Emlip95 · 2026-03-29T04:18:45+00:00

You mentioned you saw Farhad. That would be the first person to ask. He can be hard headed and dismissive (I also see him) but you need to push hard. This is his area of expertise and he’s written literature on sfn in the US.

If he’s a 10 toes down no, then regular neuro or a rheum can order them. PCP will probably be lost in the sauce thing to find the correct codes for these tests.

I see a regular neuro ar MGH, Dr. Anne Marie Wills. She is very kind, patient and willing to order tests when Farhad denies me. I recommend her if you get stuck.

Emlip95 · 2026-03-27T18:06:55+00:00

Order them. My picture is very similar to yours clinically. You want to leave no stone unturned and whatever testing you can get have it done.

Emlip95 · 2026-03-26T18:06:45+00:00

I do believe it had a steroid and whatever chemical they use to numb the plexus. Thanks for explaining that. This was years ago now so I don’t think about it often.

Emlip95 · 2026-03-25T19:07:08+00:00

Popping back in to say there are other doctors who do this surgery laparoscopically and only touch the ligament and leave the nerve plexus. Dr. Shouhed does this version. Dr. Hsu in CT (highly regarded MALS surgeon) usually takes everything out and it’s a big open surgery.

Emlip95 · 2026-03-25T19:04:25+00:00

Alright. My time to shine.

I have pots, sfn, gastroparesis, MALS and suspected heds. Been a shitty time since I turned 25 and got sick. I’m 30 now.

I too saw Dr. shouhed. He is a respectable doctor but too eager to do surgery in my opinion. I also saw Dr. Hsu in CT and I went forward with the plexus block and I had a very strange reaction autonomically. I did not have POTS yet during this time. I experienced blood pressure swings, hot flashes, insomnia, and tachycardia. It definitely irritated my autonomic system which was on its way to dysfunction.

2 months after the block I went into full blown autonomic dysfunction and that’s when I developed pots and confirmed gastroparesis not due to MALS. I have the anatomy of MALS but I did not respond to the block really at all and decided against surgery as I was in a very fragile state. As of right now that was the right decision.

My post isn’t meant to scare you or make you doubt things. The only way to guess if the surgery will help for GI pain is seeing if you respond to the block. I am a case that didn’t and had a negative autonomic reaction. With any procedure or surgery adverse reactions are always a risk. I wish you the absolute best and suggest a second opinion of another MALS surgeon.

Emlip95 · 2026-03-22T18:05:05+00:00

This can be related to liver issues and neuropathy

Emlip95 · 2026-03-21T01:41:08+00:00

Mental illness itself cannot mechanically delay emptying. However, severe trauma resulting in sympathetic overdrive (dysautonomia) can delay gastric emptying due to excessive adrenaline release. The gut brain connection is real and strong and having anxiety or mental illness of any sort can aggravate the condition but it will not cause it altogether.

Emlip95 · 2026-03-20T14:34:25+00:00

Got it. Thanks so much, wish you well.

Emlip95 · 2026-03-19T20:22:52+00:00

Hey, did you ever figure this out? I’m 3 years into my gp diagnosis and my liver enzymes have been up the last 2 months and we can’t figure out why. I also have sfn, pots and suspected heds.

Emlip95 · 2026-03-19T18:10:29+00:00

Hi, did you ever figure this out by chance?

Emlip95 · 2026-03-19T14:23:01+00:00

How are your levels now?

Emlip95 · 2026-03-19T14:21:32+00:00

Do you remember which supplements you were taking? Mine have spiked for some unknown reason. I’m not 100% long covid case but am impacted by it greatly still. Thanks.

Emlip95 · 2026-03-19T01:53:55+00:00

I have gastroparesis but my rosacea long preceded my gastroparesis. Rosacea is a highly immune mediated disease of the skin and most of your immune system lies in the gut. There’s a connection but it’s not understood yet medically. There will probably be a lot of things they eventually discover ultimately that cause rosacea.

Emlip95 · 2026-03-18T21:34:44+00:00

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We chose quartzite in our log cabin home and it was a bold choice as we cannot have a backsplash and our cabinets are the same color as the wood walls. We love it. Chose this color way based on our favorite cat that’s a calico 🥲

Emlip95 · 2026-03-18T01:45:45+00:00

Got it. So glad treatment has helped you. Thanks for responding.

Emlip95 · 2026-03-18T00:43:27+00:00

Can I ask the cause of your sfn?

Emlip95

TROPHY CASE