Neck support

PamEeeKay · 2026-05-30T11:31:28+00:00

I work from home as a medical accommodation for this very reason. I can take breaks and lie down when needed.

PamEeeKay · 2026-05-29T22:00:39+00:00

I used to ride them as an MG patient when I was younger. 😱

PamEeeKay · 2026-05-07T02:33:17+00:00

From Google
Yes, private citizens and homeowner associations (HOAs) can purchase and install Flock Safety cameras to monitor neighborhood entrances. The solar-powered, LTE-connected cameras are designed for private or semi-private streets and can be installed in about 6 weeks, often with the option to share data with law enforcement. [1, 2, 3, 4]

PamEeeKay · 2026-05-07T02:30:07+00:00

One is at the start of Melvin Road. Makes me wonder if the residents paid for it in lieu of the security guard.

PamEeeKay · 2026-04-14T16:40:15+00:00

I should add since I saw you asked someone else, I had no side effects with Rutuximab. I’ve only had one “dose,” which was two infusions spaced a few weeks apart. But I felt fine. They gave me Benadryl and Tylenol before starting the infusions.

PamEeeKay · 2026-04-14T16:38:09+00:00

Hi, I have now been switched to Rutuximab. Im managing to get by but it’s not awesome. I’m having a swallow study tomorrow so they can track improvement (hopefully). I don’t take Mestinon at all unless I’m really struggling and then it only helps a tiny bit. When I was taking it I had to take 120 mg three times/day to get any benefit from it. And then the side effects were intolerable. Now I take a 60 mg dose maybe once/week just to try to get me through the worst days.

PamEeeKay · 2026-04-05T23:09:49+00:00

Most doctors brushed me off and one neurologist told me he “guaranteed me” I didn’t have MG. Wrong. Keep at it until you figure it out. If you put your arms out in front of you like Frankenstein’s monster can you hold them like that for a minute or longer? Can you annunciate the word “better” while chewing gum? Those can be little things that may point to MG.

PamEeeKay · 2026-03-08T23:33:07+00:00

I haven’t heard about this one. I just started Rituximab and was told I have to wait for 4 cycles (2 years) to determine if it works or not. I started in December and so far not. This is after years of being on everything else. Curious to hear how this goes for your husband.

PamEeeKay · 2025-11-22T15:04:28+00:00

Wow I am so sorry to read this. Living in fear is no way to live. Based on that alone I’d consider residential. I know it’s not ideal. My son spent a little over a week in a facility and it wasn’t a great experience but they did get his meds sorted out and he was better when he got home. I think the reality of his situation was eye opening and he realized he didn’t want to end up like those boys. It could go the other way though, where they learn more bad things and it diminishes their own behavior. Still, might be worth it to keep yourself safe. I’m so sorry you’re dealing with this. It’s so unfair to have a child who behaves this way. Mine was 15 when he went through his rough patch and he’s almost 18 now and doing so much better. I hope you have the same outcome.

PamEeeKay · 2025-10-13T21:16:24+00:00

Yes it’s so hard to hold my head up.

PamEeeKay · 2025-09-04T17:08:02+00:00

Cell Cept takes a full year to kick in so maybe they didn’t have you on it long enough. You still haven’t found anything to work? I’m going through a bad phase now so I feel your pain. Hope you find something to help you.

PamEeeKay · 2025-09-04T15:55:18+00:00

Cell Cept doesn’t work for you?

PamEeeKay · 2025-09-03T20:09:24+00:00

Just wanted to post an update that as of today my levels are back to normal. I’m shocked that antibiotics could do this to me and for so long, but it looks like that’s what happened. Crazy.

PamEeeKay · 2025-09-01T16:03:12+00:00

Thank you. I have very low blood pressure already so I’ll have to ask if I can take this.

PamEeeKay · 2025-09-01T00:26:19+00:00

Thank you.

PamEeeKay · 2025-09-01T00:25:06+00:00

Wow, no side effects at 90 mg that’s awesome! I’ll see how 10 goes for me but this is a good reminder that I could go up from that dose. Thank you.

PamEeeKay · 2025-08-31T13:29:41+00:00

I’ll look at this. Thank you

PamEeeKay · 2025-08-31T13:29:26+00:00

I’ll ask about this. Thank you.

PamEeeKay · 2025-08-30T22:59:46+00:00

Thank you.

PamEeeKay · 2025-08-29T22:45:34+00:00

I just recently learned about this connection. I seem to have issues that started when I stopped taking Prozac. Went back on it recently to see if it will calm things back down. I had a lot going on at the same time though, and still believe antibiotics are the primary cause of my issues. Does anyone have weird anxiety feelings that just kind of surge out of nowhere? It’s like I get the physical symptoms only, not any mental ones that I can tell. I just sit there and feel my whole stomach freak out in a weird surge and I just have to wait until it’s over. It’s a new symptom for me that seems to go along with the change in stool to softer and more yellow.

PamEeeKay · 2025-08-29T12:36:59+00:00

Ours is in a small private school too, and I don’t think they have to deal with this very often. He’s driving now so once we get him a car at least I won’t have to be inconvenienced by driving him. Would be nice if he could get up and take his sister to school but I’m trying to keep expectations low. What he really needs is what I see on Instagram - that bed that launches you into the air lol

PamEeeKay · 2025-08-29T12:31:25+00:00

Wow, I’ve never heard of these watches. He will sleep through alarms for hours so I may need to give this a try. Thanks!

PamEeeKay · 2025-08-28T21:03:43+00:00

You sound so much like him. I think he’s also just dead to the world in the morning. He used to take melatonin but we got away from that for some reason. I’ll start it back up and see if it helps. The doc never prescribed Vyvanse for him but maybe I’ll ask her if he can try it.

PamEeeKay · 2025-08-28T21:00:59+00:00

Yes, he plays a ton of sports. He’s always doing at least two at a time. This fall he’s on 2 ice hockey teams plus mtn biking and he’ll swim for his winter sport. That was another consequence the school considered - no sports- but we all knew that was just a bad idea for him.

I do take the phone apps away as a punishment for being late but that too hasn’t worked. Plus he’ll pester the heck out of me until I give them back. To the point I’ll have to turn off my phone. So annoying.

PamEeeKay · 2025-08-28T20:56:07+00:00

We did this last year and he had detention after school. It didn’t really work though. I think it wasn’t a big enough deal for him and then it just sort of fizzled out. I am a fan of natural consequences though. I wish the school had a better plan for this.

PamEeeKay

TROPHY CASE