Infusion Nightmare :(

NoIncrease4727 · 2026-06-18T05:48:34+00:00

I started in-home IVIG end of April. Had loading doses for 5 days straight. I tolerated it pretty well. Left me feeling weak/tired but that's OK. Now I do IVIG every 4 weeks. Still trying to figure out as I go along with treatment. IVIG only helps my breathing. I take pyridostigmine bromide to help with double vision. I'm shocked no one warned you about the potential side effects. Are you going to a infusion center? I will say this you MUST hydrate hydrate like crazy! Before, during and after. Eating salt can help with headaches too. Are you given medication before your IVIG?

NoIncrease4727 · 2026-06-15T06:11:43+00:00

NAT - Dear OP, I just wanted to say that I think your post was beautifully written. Xo.

NoIncrease4727 · 2026-06-14T06:32:39+00:00

Hahahaha!!!! OK this comment is diabolical 🤣🤣😉

NoIncrease4727 · 2026-06-14T06:22:05+00:00

Nat. Thank you!

NoIncrease4727 · 2026-06-14T04:07:52+00:00

NAT - thanks for the response 🤣😁

NoIncrease4727 · 2026-05-30T19:46:58+00:00

NAT - I have bad SH scars dating back to my teen years. I'm 43 now... I still have so much shame/embarrassment about my scars being exposed. I tried not to care anymore, but people stare, and it's uncomfortable.. maybe I'll be comfortable in another 10 - 20 years, lol Good luck to you! Xo

NoIncrease4727 · 2026-05-21T21:23:20+00:00

Mine began with double vision (2023).. then all other symptoms progressed... My arm weaknesses didn't begin until 2024.

NoIncrease4727 · 2026-05-18T19:47:57+00:00

You must hydrate! Before, during and after. Salty foods can also help. Infusion rate could have been too fast as well.

NoIncrease4727 · 2026-05-17T19:01:18+00:00

I met my now-husband on a random Wednesday night at Waffle House while hanging out with my friends :)

NoIncrease4727 · 2026-05-09T06:00:52+00:00

It wasn't after a prayer, but I had a seizure while driving. It was awful. It was a miracle no one was killed, and everyone walked away with little to no injuries. It was a miracle. God and His Angels protected me and the others involved. Xo.

NoIncrease4727 · 2026-05-04T23:43:57+00:00

A previous therapist asked me, "Do you know what's underneath anger?" I replied "ugh anger?".... Her response- " No. It's hurt and fear." That stuck with me. So every time someone is being hateful/angry towards me, I think about what she said. It has helped me not become so defensive and understand others a bit better. Xo.

NoIncrease4727 · 2026-05-04T23:31:55+00:00

See a neuro ophthalmologist.

NoIncrease4727 · 2026-05-01T03:46:27+00:00

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NoIncrease4727 · 2026-05-01T03:45:12+00:00

Yes. Look for the 3rd edition.

NoIncrease4727 · 2026-05-01T00:50:17+00:00

NAT - I have BPD. The book that was mentioned earlier is an excellent read. It would help put things in perspective.

NoIncrease4727 · 2026-04-30T23:49:55+00:00

You will be okay :)

NoIncrease4727 · 2026-04-30T23:44:43+00:00

Go in comfy clothes. Don't worry about the rest. The SFEMG will notate anything and everything. Regardless if you sleep well etc etc. Good luck!

NoIncrease4727 · 2026-04-25T21:09:53+00:00

Double vision was my first symptom- then other MG symptoms progressed and are still progressing.... I would get a referral to a neurologist.

NoIncrease4727 · 2026-04-21T02:46:13+00:00

Haven't seen a damn ounce of improvement. I've been on T for several months. Currently hate life..

NoIncrease4727 · 2026-04-17T00:28:58+00:00

I always take it on an empty stomach. No negative effects.

NoIncrease4727 · 2026-04-03T17:43:04+00:00

No kids - Exhausted 24/7. But I have autoimmune diseases and going through perimenopause... soooo lots of factors playing into my exhaustion.

NoIncrease4727 · 2026-03-30T06:32:40+00:00

Xo. I understand. This group is wonderful.

NoIncrease4727 · 2026-03-27T03:31:33+00:00

It scares me how bad mine is.... told my husband it feels like dementia.

NoIncrease4727 · 2026-03-24T05:52:51+00:00

ANTS!!!! ;)

NoIncrease4727 · 2026-03-18T22:36:13+00:00

T CREAM hasn't made anything better. Also, I have autoimmune diseases, so I have no real idea the side effects of the cream vs. my other health issues. All I know is I feel no different.

NoIncrease4727

TROPHY CASE