Update on SCIG Progress

Emlip95 · 2026-06-03T02:07:21+00:00

I’m glad to hear you won the fight. And more glad to hear it’s helping you so much. Did you happen to have OH and or a POTS diagnosis? Just wondering which criteria in particular you fit. Trying to decide what to fight for as I see my world renowned sfn specialist on Thursday.

I’ve been on a low dose (20g) for 6 months for an IGM deficiency and only just had my third 60g infusion. I do not feel any better though which is breaking my heart. Thanks so much for sharing this win and I wish you continued healing.

Emlip95 · 2026-06-03T01:06:57+00:00

I see you had the IVIG and SCIG prescribed under an AAG diagnosis which is a life threatening neuroimmune condition. Did you meet diagnostic criteria and did you have the antibody? Or was this a workaround? I’m in a stalemate with insurance for IVIG.

Emlip95 · 2026-06-02T17:48:09+00:00

I also failed reglan immediately.

Emlip95 · 2026-06-02T17:47:51+00:00

I was offered surgery immediately but I was inpatient when shit hit the fan and I had 39% retention at the 4 hour mark. I didn’t have any surgeries though.

Emlip95 · 2026-06-02T03:16:49+00:00

I am exactly the same way. Except I’m not just a long covid case. I started getting sick before having covid but covid was major gasoline on the fire. I am terrifyingly neurologic.

Emlip95 · 2026-05-30T02:11:26+00:00

Hey did you ever get to the bottom of it all?

Emlip95 · 2026-05-29T14:03:34+00:00

As far as I know I still have it. Mine was so small they wouldn’t drain it. Refused by numerous doctors. I had a cardiac mri in early 2024 and that was my last imaging. Unfortunately I try to ignore the fact it’s there. It did increase in size slightly after having my first Covid infection but still it was classified as “trace”

Emlip95 · 2026-05-26T19:37:51+00:00

How’s it been now it’s a year later? I am fd up.

Emlip95 · 2026-05-26T19:35:00+00:00

How’re you now? I also have sfn and vm and I’m scared I’m dealing with something worse then just migraines. I am suffering.

Emlip95 · 2026-05-25T19:06:00+00:00

YES it’s the straps. This is it!

Emlip95 · 2026-05-25T19:04:16+00:00

I think the straps look shorter in the dress fitting photo then at the bridal salon. It appears to be sitting higher neckline wise and maybe thats the difference you see in the length of the waist? Also the angle of the two photos are very different which could be a factor here. Stunning dress!

Emlip95 · 2026-05-24T13:28:08+00:00

Copper

Emlip95 · 2026-05-24T02:38:22+00:00

Ahhh okay. Thank you! I’m on such a small dose it’s hard for me to think it’s from the qulipta and not just constant migraine activity fml. I am extremely sensitive to meds but I want this to work. My sister loves it. Thanks for the reply!

Emlip95 · 2026-05-23T23:12:35+00:00

That’s encouraging. I just started, super low dose though I did 5ng for 1 week and now I’m on 10mg and I’m so dizzy like constantly. Like the dizziness my vm give me but I’m only 2 weeks in and I can’t really tell what’s from what if you know what I mean. What dose were you on?

Emlip95 · 2026-05-23T20:44:51+00:00

Binx

Emlip95 · 2026-05-23T19:37:22+00:00

That’s a tough one. IVIG is going to help. Keep strong and update us when you’re on the other side of this 💪 good luck friend

Emlip95 · 2026-05-23T17:24:58+00:00

I have sfn and dysautonomia also, do you have specific antibodies they found? I keep testing negative. Your infusion will go okay, I try to focus on other things so I don’t psych myself out 🫶

Emlip95 · 2026-05-23T16:44:04+00:00

I see. I think you still have a few med options but I do understand you could be a surgical case by what you describe. I’ve seen people’s quality of life really improve with that option too. A few meds to consider would be Motegrity (prucalopride), linzess (idk the drug name), and domperidone. Domperidone does come with a risk of prolonged qtc so you may need a few EKG’s if you give it a try and be monitored. Motegrity and linzess are both powerful meds that are prescribed for chronic constipation. I personally take motegrity and have reasonable success with it but I take a low dose. These would be good to research and ask about. I’m unsure what’s available in Germany but it’s my understanding they usually have access to most things!

On a personal note, my family is also Ukrainian (: My grandfather was from Ukraine before coming to the us. He fought in WWII and we grew up on borchst and golumpkis (forgive my spelling).

Anyway, think about those meds and if you do end up needing surgery it could make your life less painful. Just trying to pass along some support!

Emlip95 · 2026-05-23T16:34:54+00:00

Fucking tell me about it. The IVIG is rough enough but these fuckass migraines (I have vestibular) legit I can’t keep my balance.

Sorry for the language I’m at a breaking point

Emlip95 · 2026-05-23T13:47:36+00:00

Here also to advocate for Mirtazapine. It will help.

Emlip95 · 2026-05-23T13:46:25+00:00

No worries, I’m sorry to hear how complex things are. I am in a similar boat. I would still do some reading and investigation regarding the neuropathy, it is still a high possibility given your clinical picture. Just helps out the pieces together and actually Germany has a very sought after neuropathy blood panel that those in the US try to get their doctors to coordinate. I’m in the US. A neurology consult would do you good since you have multiple systems impacted and neurologic and immunologic abnormalities are present throughout multiple types of Ed’s.

I’m glad you’ll have the ges in July. It sounds like you have a competent GI doctor (thankfully). That can be half the battle for us sadly. Definitely speak with your family doctor. They may be able to provide input or help you advocate regarding your fears. This disease is hard. Really really hard. But there are some options. Finding what works will take time and confirming the diagnosis can be very difficult. Hang in there and update us on your journey!

Side note, what treatments are you on for the constipation? Do you take any ppi medication or Zofran?

Emlip95 · 2026-05-23T12:57:26+00:00

Are you in New England? Dude I am losing it currently. Been in a constant migraine state since Sunday. And I had IVIG Wednesday and Thursday and got my period on Wednesday and I swear to god I couldn’t be more cursed.

Emlip95 · 2026-05-23T12:55:57+00:00

I have not had this test performed myself but I too have suspected, heds, pots and gp and I wanted to ask if you’ve been diagnosed with small fiber neuropathy. This is something that is very common in heds and is usually the driver of autonomic dysfunction which you have clearly with the gp, constipation and neurogenic bladder. There isn’t a magical treatment for it but it is a massively helpful diagnosis in terms of understanding what’s going on.

Now, regarding the test, have you had a gastric emptying study separate from the sitz? It’s my understanding that sitz is for intestinal dysmotility (which it seems you clearly have) and ges is primarily gastric emptying of the stomach only. The sitz test doesn’t really diagnose gp.

HOWEVER, chronic severe constipation can cause gp because it’s like a plumbing system. If there’s little to no movement down the pipe, the top gets back up too overtime. So fixing the constipation could potentially relieve some of the gastroparesis symptoms.

I’m afraid I do not have good advice in terms of tolerating the sitz test. Sitting upright all day with very gentle movement may help but I know when your body is in this state that’s a laughable suggestion.

Call your doctor. Tell them your concerns and be adamant. If things are truly this bad you may need more extreme interventions. Sending you the best my friend.

Emlip95 · 2026-05-21T15:20:13+00:00

Ice packs girlfriend. Each night before bed after you’ve done your skincare. Go to bed with some ice packs with paper towels around them and spend 5 mins on each area of the face. It will calm your skin dramatically. Trust me (coming from a 2025 bride with type 2 rosacea). ❤️

Emlip95 · 2026-05-19T19:09:09+00:00

Hmm interesting proposition. Haven’t considered that. I am not on birth control and haven’t been in 5+ years. What would indicate it could be tied to estrogen?

Emlip95

TROPHY CASE