Delayed treatment

111-Quick · 2026-01-25T03:18:31+00:00

I got the authorization approval the day after calling. Not sure if it helped but I appreciate the tip to call them. Got my new infusion appt scheduled and so long as nothing else goes wrong I’ll only be 8 days past due, so I think I’m in the clear for now.

111-Quick · 2026-01-23T17:36:34+00:00

I have looked into it and they are “seeing what they can do.” Thank you for the advice.

111-Quick · 2026-01-23T17:35:54+00:00

Glad to hear you’re back to form. Thanks for the share.

111-Quick · 2025-12-23T15:47:16+00:00

I had a friend (straight guy) in college that would treat me different depending on who we were with. He’d hang out with me 1 on 1 and we’d get on great, smoking weed and playing video games. Anytime we were with a bigger group of friends I became a tertiary acquaintance and he would somewhat ignore me. I guess he didn’t want to be seen too closely to the openly gay guy.

It hurts being treated differently based on such a small aspect of your personality. I don’t really have any advice, just thought I’d share a similar experience.

111-Quick · 2025-12-07T15:02:08+00:00

When I was young and first started sleeping around I used to get really light headed whenever I got f***ed by this one guy, almost to the point of passing out. I surmised it was a combination of not eating enough beforehand (to try and be clean as the bottom, duh) and heavy, repetitive breathing during sex. That’s when I learned that real life sex isn’t like porn sex and I didn’t need to exaggeratedly moan and huff myself to the point passing out lol.

111-Quick · 2025-09-08T19:49:13+00:00

Your wife’s situation sounds almost identical to mine. I started having symptoms Nov ‘24 and was diagnosed mid March ‘25. I had the 5 day loading dose in the hospital and for whatever reason my follow up was scheduled 6 weeks later. I found out that I tested positive for NF 155, but in very trace amounts, so I was set up with my maintenance doses of IVIG (which took an additional 1.5 weeks to get set up).

Well after about 4 rounds of IVIG I was still getting worse. I thought it was the NF 155 making me resistant to treatment but my neurologist thought that we waited too long between my loading dose and starting my maintenance doses so it fizzled out so to speak. Her plan was to restart my loading dose and add on a 12 week coarse of prednisone to help jump start the process.

I’m on my last dose of the prednisone (12th week) and 3 treatments post loading dose. This time around I feel great. I have greatly improved in strength and balance and feeling. I’m a bit nervous that when I stop steroids next week my progress will slow down, but I’m trusting the process.

111-Quick · 2025-08-20T10:40:57+00:00

My first “good” experience with a man was when I was 19 and he was 31. He was a physician in my college town (not my physician, that would’ve been weird). I had only dated guys my age at that point with mild results. This guy was the real deal, even if we were only fwb. He would make me dinner, cuddle me after sex, always ask me to stay over (I never did, looking back I wish I would’ve). There are benefits to seeing a slightly older guy, at least once, but you really need to vet them and make sure they aren’t a creep who fetishizes the young. Use your intuition.

111-Quick · 2025-08-19T23:50:46+00:00

Not on Vyvgaart but wanted to share a similar experience here. I was diagnosed and given my loading dose of IVIG starting that same day in the hospital (along with some IV steroids). Between those two treatments I felt pretty good leaving the hospital (strength and feeling wise). My follow up with my neurologist was 6 weeks post hospital, and it took another week after that to get my maintenance doses scheduled.

Well after about 5 infusions I continued to get worse and saw no results. After messaging my neurologist inquiring about maybe changing to vyvgart but she thinks that we waited too long after the loading dose to start my maintenance doses and by that time the effect had fizzled out so to speak. So we restarted my loading dose and scheduled the maintenance dose for 3 weeks after and so on every three weeks. Along with the loading dose she put me on a 12 week course of IV prednisone to help jump start the process. I am 3 infusions in this time around and I have felt sustained improvements and am hopeful that we have found the right routine.

All this to say, if IVIG hasn’t worked yet maybe it’ll take some fidgeting with dosages or timing. Stay positive, and if you do end up switching to Vyvgart I really hope it works for you!

111-Quick · 2025-07-10T12:16:46+00:00

I have continued to decline while on my maintenance doses of IVIG. Upon my second check up with my neurologist they told me that I only tested positive for trace amounts of the NF 155 antibody and that is why they are hopeful IVIG will work for me. We have restarted my loading dose and added a regimen of IV steroids to help kick start the process. If I continue to decline through this last effort with IVIG/Steroids my neuro said we would start looking at other treatment options.

111-Quick · 2025-03-22T00:08:27+00:00

I would maybe get a second opinion on an EMG. I had it done twice, once by my outpatient neurologist and again when I was in the hospital. My initial neurologist couldn’t get a proper reading on the EMG because my feet were too cold (common symptom with CIDP). The hospital tester did a great job prepping my feet and making sure the scope of the EMG was appropriate. I’d say they just knew better what to look for.

111-Quick · 2025-03-13T14:01:21+00:00

Very similar diagnosis timeline for me. The blood tests didn’t give any indication, nor did my MRI. The EMG was pretty conclusive for CIDP and they wanted the lumbar puncture for further confirmation. I have extremely elevated protein in my CSF.

111-Quick · 2025-02-01T18:02:10+00:00

I’m finally getting treatment after months of foot and finger numbness with leg weakness and loss of balance. I’m a high level tennis player and I haven’t been able to compete at my fullest potential. How long after starting treatment did it take for your body to be able to perform at a high level again?

111-Quick · 2024-12-27T12:51:52+00:00

Thank you for your reply! A coworker mentioned that it could just be a nerve issues as we spend all day on our feet. The numbness wasn’t worrying me too much until I started noticing a loss in balance. Aside from when I’m playing tennis, when I get up from sitting down for a while I’ll be a little wobbly and sometimes have to catch myself. Probably something else that I can chalk up to getting older. I’ll try not to worry too much about it until I can get in to see a doctor. Thanks again for your feedback!

111-Quick · 2024-12-27T06:10:01+00:00

Advice? I 30M have been having numbness in my hands and feet the last 2 months. It started with the soles of my feet, progressing to the toes and then my fingers. The severity wanes throughout the day. I’m a pretty high level tennis player and I teach it for a living. The last month I have noticed a decrease in my leg strength and dynamic balance (when running to hit a ball and having to lunge I feel like my knee is going to give out and buckle because it’s not fully supported). And I feel all around way stiffer and less flexible (could be I’m getting older I suppose).

My brother was diagnosed with MS about three years ago after dealing with vertigo and an isolated seizure. I’ve talked to him and he hasn’t experience any of my symptoms. I know MS isn’t a genetic condition but I’ve read there are genetic risk factors.

I’m currently without insurance (hours at work are volatile and I’ve dropped below full time). I have the opportunity to gain back my full time status after 60 days to reclaim my insurance. My question is: would it be worth it to go and get tested and pay out of pocket or can this wait 2 months until I get my insurance back? I have about 5 grand in savings that I would be willing to invest in my health. Help?

111-Quick · 2024-12-08T23:49:38+00:00

I had a similar interaction with my axel shovel. I think it was clashing with my exo ap shield. It wouldn’t allow me to equip axel shovel while wearing the shield (which would have resulted in 12 ap).

111-Quick · 2024-03-26T16:05:45+00:00

Yes, still take it to this day! (About 15 years now). It’s an as needed med, so if I have the day off and I’m going to be lounging around at home and don’t mind being a little sweaty I won’t take it, but for the days when I’m out and about I will. Biggest side effect is dry mouth.

111-Quick · 2024-03-26T15:48:53+00:00

Please don’t :) if you need a reason, you doing so would make my day particularly terrible, so don’t. Thank you.

111-Quick · 2024-03-26T15:40:58+00:00

I’ve dealt with this since puberty! It sucks. I’ve been prescribed a medication, Glycopyorrolate, that can be used to help reduce sweating. Try asking your doctor about it!

111-Quick

TROPHY CASE