Home from the hospital
 

I had a MG crisis or an exacerbation and ended up in the hospital for the last 5 days getting my IVIG treatments I would have normally received at home.

Woke up 2:30 am Sat morning to voice like Lauren Bacall and flood of saliva in throat. Increased respirations/conscious breathing. Couldn’t lie flat. Took mestinon. Day went rapidly downhill from there after discussion with neuro in the afternoon when I suddenly couldn't get out of a chair or walk at all. Then, I couldn't lift my legs off the couch and we hit the ER by 8pm.

Mestinon dose restricted in the hospital (like mestinon and IVIG are conflicting or the same drug) and choking became the worst it has ever been for 3 days. Kept requesting help and being denied. Choked on meds and all foods. They put me on soft foods and tried to strengthen my throat with exercises from a swallow therapist. Confronted the attending when he finally came to see me and he said he was not being notified and that I knew more about my meds than the residents. Choking ended when dose increased granted.

Breathing: NIF down to -20/-30 and VC down to 1.8 and 2.1 but since ABG’s were fine (and done when I had been on oxygen even though I protested ala Annie!! They said it didn't matter.) , they took my oxygen away. Almost no sleep with flood of saliva and choked on it during the night. On 4th day, NIF hit -60 and VC up to 2.8 and 2.9. Did these doctors learning anything?!!!!!

Walking: hip flexors are very weak PT said it was causing my balance problems even though some other muscles were gaining strength each day. Neuro said I was suffering from a lack of confidence if I couldn’t walk.

Cause? Wondering about given a 30 mg dose of pred for an MRI the week before. I am very sensitive to changes in pred and there was no taper. I was told it was one day so it shouldn't be a problem but a 2.5mg drop last Fall put me into an MG tailspin on my usual regimen and there are new underlying undiagnosed issues cannot be helping with some kind of peripheral neuropathy type of thing going on too.

I am gaining strength very fast now with IVIG coming on board but I am using a walker and needing assistance with balance even with that still. Each day is way better than the last. This was a massive crash and with the frequent IVIG I receive (5 days every 21), I am sure my neuro is going to be in shock when he is back from vacation next week. How can this happen? Could it be the pred thing? What are your thoughts on things that went on in the hospital? I would love to hear from you guys and how you have been treated at the hospital.

debra:rain:

:D You made my day, Debra, which I know wasn't your goal. So, "a la me," I'm going to scold you about not dialing 911!!!

It's summer. That's when all MGers have to be extra careful. I can't believe how many of you are tanking! I'm sorry you had a bad one yet again.

Don't they get it about the oxygen? It can make an abnormal carbon dioxide level look normal. I honestly think the majority of med students completely flunked fluid/electrolyte status in school (it's all about respiration/metabolism). And I'll bet they too did a bedside spirometry instead of wheeling you over to pulmonology for full PFT's.

Are you on Pred daily? If you are on that for any extended period of time, your adrenal glands basically stop working. Then, if you have too sudden of a drop or too much of one, you can have an adrenal crisis. That can definitely make you weak. You might feel really out of it, sweat profusely or a number of other symptoms. You might want to consult an endocrinologist about it.

Were you out in the heat at all? It could be a combo of that and the Pred up and down.

Why they do that take away the Mestinon BS in the hospital is that they are always thinking MG patients are having a cholinergic crisis instead of a myasthenic crisis. It's like we're guinea pigs. Let's withhold drugs and see if the patient gets better or worse. Not exactly a smart thing to do if you aren't in an ICU. And MG patients usually know if it's the disease or the drug making them worse. If you get worse in between doses, it's probably the disease. Duh.

Again, you guys have the absolute right to have your own meds that have been prescribed for you - by a doctor who knows you better than a resident - while in a hospital or ER. Changing meds on someone who is in a crisis is so dangerous. Especially when they try to change from a brand name to a generic or a brand to brand. Drugs are not all created equally.

Doctors do not take Pred seriously enough. You cannot reduce a dose in someone who is sensitive to drugs like you are so suddenly or too much at a time. I've known others who don't have MG (who are on Pred due to lupus) who got weak like that as well.

I'm babbling . . . I'm so worn out. It's been like Florida here in MN and it takes like a minute to get worse.

Debra, I hope you will continue to get better. I'm glad you are being assertive during your Club Med vacations. :mf_argue: Like we have the energy during a crisis, MG or adrenal, to tell doctors how to care for us. I'm glad you have a good relationship going on with your neuro.

Hang in there!

Annie

Thanks for your reply Annie : )

Besides the weakness being totally out of hand, I had no awareness that my breathing was bad since it was being helped by mestinon at that time. Last year, when I went into crisis, it was very obvious and breathing issues were at the forefront. That is why we did not feel the need for 911.

I am on pred daily but only 7.5mg and there was no profuse sweating. I looked up adrenal crisis and it does not sound like what was going on. I did urinate 15x the day of the admit and my potassium was slightly low at 3.4 (3.5 is low end of normal) when it had been 4.5 at the end of May. Could that mean anything? They ignored it after checking it two more days and when it came up a tenth of a point, they stopped drawing blood.

I was never in the heat or overdoing it but if you recall the incident from mid-June when I overdid it in the heat and had that long walk? I don't think I ever fully recovered from that time. My stamina never came back and I believe now that I may have been in a slow downhill slide.

I am able to walk around a bit now without the walker but the farther I go, the more I have balance checks and need the walker. Physical therapy came yesterday and pushed me too far and I didn't understand that until I was too worn out. It was a very short session. That will not happen again.

I have an endo appt on Monday. It was actually set up for the bp spikes and tachycardia a long time ago.

debra

Debra, Make sure you tell the endo about the excessive urinating. There are people more sensitive to Pred and then your adrenals might be too. A morning cortisol might make sense to do. And, yes, any change in electrolytes can mean something! Bring that up too. Your kidney function should be checked if it hasn't been already. A good endo will run, at the very least, a comprehensive metabolic panel. Doing one first thing in the morning, while fasting, is best. Don't forget that Pred can bring on diabetes too.

I hope the appt. goes well.

Annie