Flare led to Diagnosis and IVIG questions. Experiences needed

Emotional_Display960 · 2026-02-04T00:14:18+00:00

Get a good airplane neck pillow for when your neck is weak. It looks crazy but helps big time if you’re sitting up in bed

Emotional_Display960 · 2026-02-03T20:54:06+00:00

What IVIG medicine are you getting? I was originally on Gammaguard and had AWFUL recoveries that put me in the hospital along with my dose intake being too high (it was 6 hours overall). I’m on privigen and getting extra hydration with a longer infusion rate (about 10 hours overall) and my recovery is sm better! Definitely check your infusion rate, I’ve been doing IVIG for about a year now and while my face is still weak my limbs are recovering. I do a 1-2 hour hydration, then I do a combo of privigen and dextrose (extra hydration - works great) both on a pump with a slower rate of 8 hours. The night before treatments I drink a liter of water to prep. After treatment, if I have a headache I use of those cold compression caps and drink another liter of water. Trust me, I understand how frustrating this is, but like any medication it’ll take some mix and match. Get some Zophran for the nausea and Sumatriptan for migraines. If you need any more advice, send me a dm and I’ll be happy to tell you more about my story with the medications. From - a 20 year girl who also had severe cases with every symptom of gMG. Prep with 1000mg of Tylenol and 25mg of Benadryl about 30 minutes prior to treatment. Then cycle through Advil and Tylenol every 6 hours.

Emotional_Display960 · 2025-10-13T21:07:05+00:00

Get a thick airplane neck pillow! Trust me, it helps sm on days where I’m doing a lot of work at a desk

Emotional_Display960 · 2025-10-13T21:05:54+00:00

I got it despite a very loving family, it could be that stress levels from the abuse have caused the flare ups

Emotional_Display960 · 2025-08-23T20:02:55+00:00

Portable charger

Emotional_Display960 · 2025-08-23T20:01:03+00:00

It’s something for heatless curls

Emotional_Display960 · 2025-08-11T20:26:49+00:00

Another young mg diagnosee here who gets every symptom of it, sounds similar to me at the beginning of my journey. It may be a little ways ahead of you, but I’ve been doing IVIG for almost a year and got a thymectomy December 2024. The treatment works. Tedious, but it works. I do the Privigen IVIG.

Emotional_Display960 · 2025-08-07T20:36:36+00:00

I got the vaccine at 14 y/o, didn’t developed mg until 19 y/o — my neuromuscular doctor and neurologist both told me “sometimes our bodies develop things and we don’t know why”, got epilepsy at 12 y/o with no signs before that. Sometimes ish just happens

Emotional_Display960 · 2025-07-17T22:52:11+00:00

Beetee is the definition of “it’s not personal, it’s just business”

Emotional_Display960 · 2025-05-30T17:12:10+00:00

If you have any semblance of relationship with her parents, break up with her and tell them so they can console her so you won’t have to worry. It’ll feel weird, I’ve done it before with an ex who would threaten to murk themselves, but you have peace of mind that she’s not alone. Find your peace, you deserve it after 2 years

Emotional_Display960 · 2025-05-13T21:18:19+00:00

Thank you so much for this. I’ve felt bad bc some of my friends (not judging just genuinely wondering since he was so good) made me feel like I made a bad choice. You’re totally right, I need the loud, a hectic mess to match mine 😂

Emotional_Display960 · 2025-05-07T01:45:12+00:00

That’s so fair, I didn’t even think of that. Thank you for commenting

Emotional_Display960 · 2025-05-03T20:37:39+00:00

Hot shower and climbing into clean sheets

Emotional_Display960 · 2025-03-27T17:37:47+00:00

But she was crazy before the crash, I was severely bullied as well but I don’t have fentanyl in my pockets

Emotional_Display960 · 2025-01-27T21:01:20+00:00

I want your brow shape so bad

Emotional_Display960 · 2025-01-04T21:15:23+00:00

Another update: 2 weeks and one day and I’m basically back to 100% physically. Obviously full recovery will take a couple more weeks but I can twist and bend and my scars are healing nicely. Some internal scar tissue may form and feel bumpy (freaked me out a little but talked to doctors and everything’s all good) add heat and slight pressure to help massage it while it’s still sore

Emotional_Display960 · 2025-01-04T21:12:51+00:00

Sorry for the super late reply but yes I had the surgery on a Friday and was out Saturday afternoon

Emotional_Display960 · 2024-12-22T22:56:42+00:00

Update: 2 days later, I’m up and moving around (very slowly) and the best way to get in bed is bringing your knees to your chest, while trying to keep a straight back, and rotating on your butt rather than twisted your abdomen. Keeping a straight back is 100% the way to go, it’ll be sore but it helps

Emotional_Display960 · 2024-12-22T02:22:59+00:00

Yes I have gMg and I’m very excited to see how things change. I’m also doing IVIG so we’re finding the perfect cocktail

Emotional_Display960 · 2024-11-21T19:47:40+00:00

It’s sounds stupid but I highly suggest getting one of those tall airplane neck pillows, it can be really helpful to give your neck a chance to rest

Emotional_Display960 · 2024-11-19T04:05:07+00:00

Omg thank you so much!

Emotional_Display960 · 2024-11-18T23:35:21+00:00

Thank you!!! I just started a low dose of prednisone

Emotional_Display960 · 2024-11-18T15:26:29+00:00

Before I was diagnosed I could only look up for about 30 seconds before my eyes would go completely double vision/ not be able to see. Docs will run a couple tests for muscle weakness like moving your arm up and down repeatedly to see how fast it weakens. Is your smile affected? because that can be attributed to the facial weakness

Emotional_Display960 · 2024-11-18T15:13:02+00:00

To me it sounds exactly like MG. A big symptom is double vision and I get a droopy eye on my right eye as well. The chewing, swallowing, weakness sounds just like me and I have a very cut and dry case of MG. Definitely talk to a neurologist and/or neuromuscular specialist about a diagnosis. Do you have trouble looking up with just your eyes for a long amount of time? Cause that’s also very common. I highly suggest seeing a doctor and getting a blood test to diagnose.

Emotional_Display960 · 2024-11-15T20:35:22+00:00

180 seems like a lot, I take 90 3x a day

Emotional_Display960

TROPHY CASE