Well, that's just insane.

So you had low CO2 but now you have high CO2? Did you get copies of all of the tests done?

How much Mestinon did they have you take? And how many times per day (did they give you a script or just one dose)?

What "muscle tests" did she do? Probably an RNS and EMG, right? Well, those are not necessarily going to be positive in MG. A Single Fiber EMG is more specific to MG. Some patients do not test positive on any of those tests, even if they have antibodies! MG is a clinical diagnosis backed up with tests. Did you have a thorough clinical exam?

Do some research and find a pulmonologist over the weekend. Then on Monday, give them a call. Tell them how hard a time you're having breathing and ask to have an evaluation right away. Don't say you know what it is, just say that it isn't your normal and that you're scared.

They can completely evaluate your breathing. Sometimes, you have to go to more than one doctor to get an answer. They can at least help define what the heck is going on. They could do an overnight oximetry, arterial blood gas, etc. Breathing is their "thing," so it's best to see a pulmonologist.

Be careful about how much you push, or your chart might be "red flagged." Doctors get all scared when they have an aggressive patient (or husband). I know, you're between a rock and a hard to breathe place. I find this level of substandard care to be criminal. At least they finally did something.

I don't know if you have MG or not, but it's not nothing!!! Definitely not depression. Give me a break! If you can, get yourself an oximeter. They have some fairly inexpensive ones on Amazon. Then you'll know how it's fluctuating and if that corresponds to any fluctuation in breathing.

Just take it easy. BTW, too much Mestinon can make a person with MG get worse, too. I'm attaching the PDF for it, so you know what to look for as far as side effects, etc.

Annie

Attached Files

Mestinon_Suspension_60mg-Tablet_60-180mg_PI_May01.pdf (38.7 KB, 3662 views)

Annie,
Sorry for the confusion, I meant low CO2 consistent with hyperventilation. I'm not sure what kind of EMG it was but she stuck needles in me and shocked my muscles. I have been too sick to review my paperwork but will try to look at them today.
I understand about the red flagging aggressive patients and my husband has fretted greatly over whether he did the right thing, but I believe the neurologist is doing due diligence. It may not have been ideal but we were desperate! I have lost 14 lbs and have not found any consistency liquid/solid that I don't choke on. I drank two cans of Boost yesterday , but choked very badly on the last half of the second bottle. I deep breath and my kids take turns percussing my back to keep fluids out of my lungs. I am very dehydrated but I've pretty much lost my desire to eat and drink. My husband pushes me which is good. I have an appointment tomorrow with the neurologist again so I will see about getting fluids and a swallow eval.
I did want to ask If you had any insight about reflexes. The doc said nothing about my reflexes but from my own observation my reflexes were normal except for an abscent plantar reflex indicating the need to evaluate the brain and spinal chord. Is this consistent with MG? MS?

The Babinski sign could mean that you have a B12 deficiency. Have you ever had a concussion? Back injury? Hypoxemia can also cause it. And yes, MS, too.

https://ispub.com/IJNW/2/1/4476

http://www.emergencymedicalparamedic...abinskis-sign/

Ask to have your B12 checked. A neuro can do that test. Do you have any digestive issues? Celiac disease is common, too.

I'm glad they're being thorough. Convulsions are not normal, either!

Try sipping on some ice water in between drinking Boost or eating. Don't forget to tuck your chin down to try to swallow.

You have to drink water. If you don't, you could become hypovolemic/dehydrated and that's dangerous, too.

Anyone else have any suggestions?!

I hope you can get answers soon to whatever is going on!

Annie

I use The Ultimate Meal, a dietary supplement, during the periods that I cannot chew and have trouble swallowing.

http://theultimatelife.net/CatalogMeal.htm

You can mix it with water or juice. I like it with white grape juice. It contains all the nutrients needed to support one's body.

Even if you can only get a little down, it will be beneficial. Take small sips. During my first MS crisis before I was diagnosed, it took me 20 minutes to drink 12 ounces of liquid.

There are other similar supplements. The Vitamin Shopp was out of the Ultimate Meal today, so I got a small can of Raw Meal instead.

-Mark-

hi im sally i also started out with speach issues. took 3 yrs to dx. 3 mos ago dx with mg. end of oct ended up in a crisis.Couldnt swallow,breathe,double vision and very weak. in hosp for 10days 5 plasma exchanges. Came home 5 days of ivig treatments.Also on prednisone and mestinon. I was new to mg so didnt know i was in crisis til i walked into nuero office. this is scary stuff. ivig again in dec. i have good and bad days mostly bad.please dont let this go into crisis like i did.luckily it didnt affect leg muscles yet hang in there and be careful mg symptoms come quick hugs to you sally

Welcome spedersen.

thanks Kitt tired is not the word for it. I had ivig treatments last week helped a bit.Still having issues mg is like a day by day hour by hour thing. Im just rolling with it or ill sit and cry for hours lol hugs sally

Hi, Spedersen. Welcome!

I hope you'll do a new post so that any questions don't get lost in this one!

I'm sorry it's been such a rude awakening and that MG has been so severe right away. Keep your neuro informed of any changes. If you get worse, don't hesitate to dial 911.

Try not to sit and cry! It's so bad for MG. I know it's very hard to have it, but there are so many ways in which you can adjust your life/lifestyle in order to cope. Truly there are!

And since you're on Pred, you might be having an emotional reaction to that! In some people (like me) it affects mood. I get steroid psychosis, which is not pleasant. Avoid salt, if you can. That will reduce any fluid retention. Do they have you on a taper? How much are you taking?

Again, I hope you'll do a new post so that we can all help you out!

Annie