Jane1, I know it can be odd to think of using a walker. I have one here, and I used it for quite a long time. I still use it sometimes when I am particularly weak. Day in and day out, I use a cane, and that helps me a lot. Even though it's an adjustment to use a walker or a cane, it is a lot better than being unstable and falling! It does take awhile to get accustomed to living life with a mobility aid, but it can be a really helpful tool to enable you to (safely) do the things you need to do. If you're able to get better treatment later, and you start feeling better, perhaps the walker will be temporary, too. I encourage you to give it a try.

Take care,
Erin

Thanks all. Chilling until can get appt with Dr Allan Weiss in St. Petersburg. Need walker for now because I have never depended on someone else to take care of me. Have to keep as much independence as I can. Thanks all😷

Jane, Are you back home?! I hope not. Are you still bad off?

Walkers are a tool to keep you independent! As Erin said, it's probably a temporary situation. I love them when I need them. I love the disability carts in stores. Whatever can save energy for me is great in my book! Although, walkers are going to make your arms weak! At some point, a scooter may be necessary.

How are you feeling? Did you get your records?

You are on drugs that make those antibodies disappear. Why doctors never consider that is beyond me. MG is a clinical diagnosis backed up with tests. A negative test doesn't prove anything, as Dr. Weiss said to me when I was diagnosed.

If you are home, keep a phone on you at all times. Do you have a portable or cell phone? If you fall, you may not be able to reach a phone!

Update please!


Annie

At home for now. Waiting for neuro's office to open so I can call. Developed deep chest congestion Friday and fever spiked last night. Just when I thought my strength was returning. Not strong enough to "hack" it up. Sad to see this selfie this am with results of steroids and antibiotics. Ugh.

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Jane, You look to have a secondary infection on your lip! And you look flushed. You may have gotten pneumonia as well in the hospital. PLEASE, you need to be back in there. Do they still have you on an antibiotic? If so, which one? Do you take acidophilus? If not, you need to. You don't want to have C. diff (a bacterium that causes gastroenteritis, diarrhea, etc.) as well!!!

Lung infections, especially when you can't cough due to weak chest wall muscles, are life-threatening. Please, go back in. They also need to check your O2 and arterial blood gas. You may need a BiPap at home.

Take this seriously. And have someone look in/at your mouth. I hope you'll be okay!!!


Annie

My neuro told me on hospital release to call him if anything changed. Called first thing this am. Said I was wheezing and couldn't cough it up. He told me to call my pcp. Did that. He sent me to his nurse practitioner. What's up with that? Antibiotics, nebulizer, diflucan. Saiid she could Here fluid in my chest. Going back home to chill, meditate and hopefully light a fire to speed up Dr Weiss appt. ❤️❤️❤️❤️

Jane, You need to be in the hospital. You need supportive care that you are not receiving at either the PCP, neuro, or at home. And what antibiotic did they give you?

If there is fluid in your lungs, you need immediate 911 help. With MG, you could have respiratory failure with a coexisting pneumonia. Muscles become weaker while sleeping. During my crisis, my O2 went from 95 while awake (after 4 days in the hospital) down to 66%.

You are more than likely hypoxic. That is very hard on the heart and brain. You've already had an abnormal ECG from MG tanking. You need to be on oxygen. And you need to be reevaluated.

Just - dial - 911. Please.


Annie

My neuro told me on hospital release to call him if anything changed. Called first thing this am. Said I was wheezing and couldn't cough it up. He told me to call my pcp. Did that. He sent me to his nurse practitioner. What's up with that? Antibiotics, nebulizer, diflucan. Saiid she could Here fluid in my chest. Going back home to chill, meditate and hopefully light a fire to speed up Dr Weiss appt. ❤️❤️❤️❤️
Yes, do probiotics. No, have most of my records but not organized yet. Thanks for support everybody. Truly breathing so much better now. Just severe weakness in arms now. Whatever is wrong with me makes you crazy if you dwell on it 😆

Or, if you don't dwell on it, you could become worse.

I hope you won't.