Need advice. Sorry
 

After flaring mg , abnormal turned normal ekg, high white blood cells, three more rounds of merrily- solu ? Infusions; my eyes have be come much much worse
, speech softer
, rag doll limp all over, went from drunk staggering to without notice stumbling forward, backwards, and sideways. Thankfully have stumbled into something so far without falling. Neuro sent me to hospital with low low grade fever. Talking is difficult and shallow. Every blood test known to man performed. Flu swab, strep swab, chest X-ray, blood clot thinner shot in tummy, Three rounds of powerful antibiotics in iv. Tinkled in cup 16 hours ago and haven't tinkled again. Begged for my medicines at 1:30 am. Needed Mestinon and predinosone badly as well as my normal meds. Said they didn't know what Mestinon was. Got wrong dose of Mestinon finally at at 2:00 but no prednisone or nexium. Whispered to them I have been here12 hours without a sip of water or a bite to eat. Got a sip of water wit Mestinon and a cup of applesauce. Fever normal, still weak,but can hold phone for first time. Improving, but can barely see. New symptom along with stumbling choked on my own saliva yesterday 4 times. Too lazy to eat, drink, scratch, or tinkle. Eyes beyond horrible. Feel like an an absolute faker or imposter. This is crazy. Oh how I hate to complain. Help

First, they need to start an IV line and give you fluids. You NEED fluids!!! It's possible you have a UA or kidney infection.

WARNING: They CANNOT keep steroids from you! If they do, you will already be going through a fast withdrawal of them. Solu-Medrol is not a substitute for the tablets you are already taking. You could have an adrenal crisis, which is life threatening.

They need to do an arterial blood gas (if they haven't already).

You have the RIGHT to have your meds. If they don't know what Mestinon is, they should look up Pyridostigmine Bromide, call your neuro, or look up MG!!! They have devices to help them—like a phone and a brain!!!

Stop with the negative thoughts. You aren't a FAKER! You have very real health problems and need appropriate care. And this isn't complaining. This is a situation where you are very ill and need better care!!!

Stop talking (unless you have to with doctors). Seriously. You need to lay still as much as possible.

I guess the doctors don't know that too much Solu-Medrol is not a good thing!!! It's time for IVIG or plasma. If they can't do it there, they need to send you in an ambulance (not yet) to somewhere that can. You aren't stable and you need to be. I'm not a doctor, but it's obvious that 1) something is making your MG worse, and 2) you need better meds.

Steroids can make MG worse before it is better. And they can make whatever infection you have worse (because you are immunosuppressed now).

What antibiotic(s) did they give you? Do they know the ones they shouldn't give you?! Quinolones, Ketek/Telithromycin, Erythromycin. Those are the worst ones.

I don't want you to become a medical mistake, Jane!

Do they have you on oxygen?!! Have they checked your O2? That's the very least they can do.

They should be monitoring your heart as well at a nurse's station. And if you aren't in the ICU, you're in the wrong place. You need to have constant monitoring. Duh!!!

Geez, do I have to hop on a plane and personally tell them how to take care of a MG patient?!!! Sorry, can't fly. But I would if I could! This is ridiculous.

I hope they will get their act together. Tests are fine. But you need basic care (such as fluids) right now.

Is there anyone who can be with you? Someone should be talking for you. Even if Mike calls them. Someone has to let them know that you need better care. Heck, have them go to Home and look MG up!!!

I hope you'll be okay! Don't stress out. Meditate. Be calm. Be your best health advocate. You are the only one you need to be concerned about right now. Take good care of yourself! I hope the doctors will, too.

:grouphug::grouphug::grouphug:
Annie

Hi Jane,

Do you see a neurologist? If so, does that doctor know you are in the hospital? Have the hospital staff contact your regular neurologist. If there are other doctors who treat you, like a pulmonologist, have them contact those doctors also. If that doesn't work, ask if there is a hospital ombudsman or patient advocate, or how to get assistance when you are not getting the care you need. It is really hard when you are feeling so horrible, but you may have to ask for more help. Another way to proceed is asking a friend or relative to come help you navigate the system, if you have somebody who can help you lobby for the treatment you need.

My guess is that they may need to admit you for further treatment, perhaps a course of IVIG infusions. I hope they'll get the treatment started soon, and you'll start feeling better as quickly as possible.

Take care,
Erin

Thanks, Erin.

They can also use a BiPap to help with your breathing.

Or they could call Shands and ask for their advice, too.

Annie

Ppl. Still weak still stumbling but not as bad. Still in er. Drunkk and drugged spring breakers here. Two neuros been in today. Fever down tests good. Don't know kind of Iva mostly alone. Husband can't hear well at all. Neuro firmly believes the solution mrdrol made me worse. Going to wean me off prednisone and stay on just mesrltinon until he can get me up with Alan.Weiss in St. Petersburg. Last antibodies tests came back negative too. Constant in fluids but only tinkled 3 x in 28 hours. Not moving much but feel stronger. Trying not to talk much. Still bD eye problems. Shaking. ❤️

Jane, I hope they did liver and kidney tests.

They have to wean you off of Pred SLOWLY. Over a few weeks. AND if you become worse, that means you need the steroids (tablets, not IV) to make MG stable. Keep an eye on worsening symptoms!!!

Antibodies would probably come back negative while on steroids.

What is the end game here? Even if you become stronger, you will not be stable for a while. Maybe a month. The most important thing is to have a treatment that can stabilize you.

Seeing a MG expert is great. But please, you need to be well enough to do that.

Make sure that you sign a release for ALL of your labs, notes, etc. Sometimes, they don't tell patients everything.

Yeah, a big DUH on the Solu-Medrol!!! :cool:

:hug:
Annie

Yes, Annie's right. When you are finally discharged from the ER (or the hospital, whatever happens), ask for copies of your labs and tests to take with you. Tell them you'll need them when you see the specialists. They should give them to you. Those are useful for your doctor, but also if you go to see other doctors (at Shands or wherever). Hopefully they would send the records to your local doctors, but then you'll have the records with you in case they are slow or there is a mix-up.

I hope things start looking up, and you'll start feeling better. I'm sending lots of good wishes your way!

Take care,
Erin

In a real hospital room. Still chilling. Wow. Who knew puréed food was so good most I have eaten in forever. Not much plan but slowly stop prednisone and adjust Mestinon until I can get into to see Neuro opthamologist Duggard at univ of south fl and Dr Alan Weiss in St Petersburg innApril or May. BIGTIME total chill out until then. Still lots of maladjusted Spring Breakers filling the halls of this hospital👹

And don't allow them to discharge you until they do objective testing of your MG (arterial blood gas, O2 readings, neuro exam, etc.). Doctors can't tell by looking if you are better!

Stupid young kids. They should feel fortunate that they are healthy and not toxify their bodies with crap! ;)

MG brings with it a whole new lifestyle! Keeping cool, using plastic plates so dishes won't need doing, sleeping enough, naps, eating more slowly, sipping with your chin lower to swallow better, and so many other life changes. It's not an easy disease, but one can manage it.

BTW, did you tell the docs about your foot and your fall?!! Hint, hint.

Glad you're a bit better.

:hug:
Annie

Oh my. Told them bout the broke foot and bad scrape down shin where I fell bout 3 weeks ago. Things are feeling like they are going south on me again. The neuro yesterday who has previously said absolutely MG now asks after third negative antibodies just who other medical person thinks I have MG. Two nurse practitioners somewhat familiar and an opthamologist. Listen, if I wanted to make something up it would certainly be something where I could see, drive Keep my kayak and four wheeler. And eat good food for God's sakes. Whatever. Each has said all tests show definite neurological. Nope, no arterial bladd gas tests. Was scheduled for pulmonary function test, brain MRI and thyroid cat yesterday but had to cancel. Waiting to reschedule. Still feeling stronger. Holding my phone but its still heavy. Walked like Herman Monster and.weaved like. Drunk to the potty yesterday but didn't abruptly stumble and almost fall. They say I have to get a walker but I'm hoping that can be overcome. Whatever. When I find a dr I will take better control of this. Until then I am sorry to depend on the knowledge of you fine folks and my brother. This is getting really hard also because it is so hard to read. Darn. I hate sounding pitiful

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. :cool:

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! ;)

:hug:
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.

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!!!

:grouphug:
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.

:grouphug:
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.