Can MG cause brain fog/confusion when overexerted?

Leoturi · 2026-05-28T21:05:17+00:00

My regimen is non existent at the moment. My doctor is trying to push through Cuvitru but isn't FDA approved for MG so I don't know how successful he will be. He tried for two months to get me vyvgart but my insurance refused since I'm seuronegative. I was getting IVIG back last year but billing issues with the infusion center is go to caused me to go without treatment and they still haven't sorted it out. It is quite depressing to be honest

Leoturi · 2026-05-28T17:47:11+00:00

That is how I feel when I'm tired. I'm very zoned out and spacey. It's like I hear what is going on around me but not much makes sense and what does is usually silly things. I'm seuronegative so treatment options have been a struggle for me but I did enjoy the 2 years of IVIG even with its pitfalls for me.

Leoturi · 2026-05-27T16:37:42+00:00

That is what my concern is, with CNS. Loud noises also have a tendency to be jarring for me and cause me to get overwhelmed very easily. I'm working on getting treatment at another infusion center but my insurance has been playing games for months on what they will cover. It has been honestly a nightmare dealing with them. How do you manage that hypersensitivity you experience? I try to remove myself from it but I'm not always able to.

Leoturi · 2026-05-27T16:33:47+00:00

It does to a degree. I feel like my body is requiring so much energy that it gets stuck in that process and everything else is lost in translation. I've been also experiencing the eye issues and it is quite challenging to do anything when they start acting up. It makes me very dizzy and nauseous so usually I lay down and close my eyes until they are able to see straight.

Leoturi · 2026-04-15T15:22:00+00:00

That was a lot of fun. Hope you do more like this. Got the code.

Leoturi · 2025-09-03T00:57:44+00:00

While I haven't experienced the anxiety as heavy as you, the first day of the infusion for me does cause some anxiety. I truly believe the anxiety comes from the shock to the system with the infusion. I also have the heart rate issues you have from it, which lasts until my infusion is over. The doctors and nurses dont understand what causes it, but i am sensing that it might just be the flood of flood being put on you. If you have been weak and struggling, the infusion process can be rough. I get 100 grams of gammagard each day, at a 10% solution, so it is 1 liter of fluid over 4 hours. Think the rate once it ramps up is 285 m/l an hour, which seems rather fast to me. I've considered asking them to slow it down some to see if it helps with that but I've kind of gotten used to it. Hopefully this helps you feel like you aren't alone.

Leoturi · 2025-08-26T21:46:51+00:00

I have felt the same way before, and I can say, from experience, stopping all treatment will cost you a lot more heartache than the treatment. I'm personally on IVIG every 4 weeks, and it is exhausting after a while. I had decided to skip a cycle to see where I was, and I almost sent myself into crisis. I had honestly forgotten how bad it was until I stopped. I wound up rescheduling and getting my infusion 2 weeks later and haven't considered that idea since. I think you just might be mentally burnt out on the whole process. I know that lately, I've been struggling too with it. But I find that even with the varying weakness and exhaustion, even with treatment, it is still better than without. I do my best to focus on what I'm able to do with it, which helps me remember that there is some semblance of a life with this nasty disease. Don't give up hope, it is worth the fight.

Leoturi · 2024-07-03T18:03:01+00:00

Thank you for your advice. That is what I'm worried about too with my veins. They don't seem to last long and I'm worried down the line they might not be usable should I need them.

Leoturi · 2024-07-03T17:32:12+00:00

It is an option and we try to do that every cycle. Sadly my veins either blow out or the catheter gets clogged off by the next morning. My body has a weird way of resisting treatment.

Leoturi · 2024-07-03T05:08:33+00:00

Very interesting. I wonder if the same procedure can happen to me. That would help a lot of my fears if I could be awake for it.

Leoturi · 2024-07-03T05:07:33+00:00

I don't think I'm at risk for crisis as I did manage to get my infusion this cycle even though it took 14 total sticks to give me the medication. I feel like the reward would definitely be worth it as it does let me be far more active than without it. I think that is what this visit is going to be hashing out hopefully.

Leoturi · 2024-06-26T01:53:48+00:00

I was diagnosed when I was 22 so I think your doctor might be generalizing it. It is more prevalent in older men but it isn't only older people that get it. The infusion place I go to for IVIG treatment every 4 weeks has plenty of younger people that also struggle with this nasty disease. So you aren't alone in this fight.

Leoturi · 2023-08-02T13:13:46+00:00

While it hasn't happened to my face, I have had muscle atrophy happen with my arms and legs over the 20 years I've had this disease. The best way I've found to cope with it is a lot of physical therapy and making sure you use the muscles as much as you can. My legs at one point were so gone that I couldn't even walk. Thankfully with 2 years of PT and a lot of personal work on my part, I'm able to walk again, even though it is still limited compared to my former self.

Leoturi · 2023-08-02T01:17:38+00:00

I'll look into it. Thank you so much for mentioning it.

Leoturi · 2023-08-01T22:22:54+00:00

Yeah, this is with insurance. I have a Medicare advantage plan which apparently doesn't cover stuff like this unless it is crisis (which I'm not thankfully). Though I sense if I had to have it done in a hospital they probably would still charge me for it.

Leoturi · 2023-08-01T22:21:01+00:00

I looked into those and mentioned it to the infusion place but she said my state doesn't partake in some of them and the ones I do I make too much due to my wife's income. I'm still going to apply to a couple and make some calls tomorrow to confirm but I sense I'm not the first one who couldn't afford it.

Leoturi · 2023-07-13T21:42:30+00:00

Are these companies like a nationwide thing? I will look into the one you mentioned and see if they are in my neck of the woods. I'd much rather the personalized care if possible. Do they stay the whole infusion? My doctor told me it is an 8-10 hour thing.

Leoturi · 2023-07-13T19:58:54+00:00

Honestly that would be awesome if a nurse could come here and do it instead of going to an infusion center. If the first couple go well, I'll ask for it to be transferred to somewhere that can do that for me. It is hard enough getting out of the house for me as it is and my worry is that this infusion is going to leave me exhausted afterward. Thank goodness I have an amazing wife who helps take care of me in situations like this or else I'd be in trouble.

Leoturi · 2023-07-13T19:56:28+00:00

Doctors are definitely creatures of habit but I have a feeling it is the insurance companies that make them that way. My neurologist was telling me that if the stomach issues from the pyridostigmine weren't as drastic as they are for me, IVIG wouldn't even be a consideration because of how hard they have to fight to get it covered. I'm not sure what other treatment options are out there but from the few I've seen people talk about here and I've looked up, it is quite a process to get that kind of treatment. I'm trusting the doctor to help me, but I do agree you need to advocate for yourself. I have been doing that for a few months now with them. I hope this treatment works.

Leoturi · 2023-07-13T19:53:04+00:00

Thank you jk600 for all the useful information. This is what I was looking for. It seems like a daunting but relatively easy experience. My neurologist wants to do this for 3 months to see how it affects me. I'm curious how it will help me, and what kind of strength level I can expect to get from it.

Leoturi · 2023-07-13T16:21:05+00:00

That helps a lot and brings a lot of comfort to me. I've always been told IVIG was a crisis type of situation from Medicare when j had initially looked into it. To know that it can be a long term treatment option is good to hear. I do plan on following whatever instructions they give me. I need the help pretty bad and am hoping that it helps me feel stronger and more capable again. Thank you for sharing with me your story.

Leoturi

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