I hope your PC helps you proceed towards health. :-)

Thank you, Elinora! She prescribed me an inhaler and set me up with a neurologist who comes to her office. She's a new PC for me. We'll,see if it helps, but as of now, I can't even take clothes out of the dryer. My left shoulder, neck and arm are very weak and sore. My chest muscles are sore, as well.
I just hope I don't lose my job:( I love it!!

If you have MG your shortness of breath is due to weak breathing muscles. Low oxygen level don't show up until you are in crisis. When do you see you neuro? I really would push for the Mestinon. It really would give you some relief.

Maryt936, my. Appt is June 5th. I can't wait, but I believe the results from blood work can take a week or so, as well. Your 100% correct. My oxygen levels were great. I just couldn't engage in a conversation without pausing to breath. I'm not seeing tremendous help with the inhalers.
Do MGers use inhalers? What happens to constitute a crises? My diagphram, side of rib cage neck and shoulder muscles hurt, all of which I understand are accessory muscles. During these episodes, I cannot engage in conversation and need silence. It's very overwhelming ,

Your diaghpram is weak when you have MG. You can have 100% 02 levels and still end up on ventalator, it's happened to me, you need to make sure they don't access you just by the 02 numbers. Respiratory needs to come and do their tests like the FVC to check the strength of your diaghpram. Doing the sincle count test is a great way to see how you are doing MG breathing wise.

I am also told the PulseOx is not the best way to check oxygen and CO2 leveles in MG patients.

A arterial blood gas is a more reliable indicator. OUCH.

Along with the FVC an old, simple pulmonary test called a MVV may also help diagnose.
--Kerry

We have found that the medical staff objects to doing arterial blood gases. They hurt!?? I think they have gotten used to the oxygen monitors and arterial lines and have lost the skills. However with the monitor for oxygen levels combined with venous blood gases you essentially have all the information you can get from arterial blood gases. Inhalers, if there is not complicating asthma, may just make things worse.

Here is a link to an article about venous blood gases:
http://www.pitt.edu/~mercyres/Abg-ref.pdf

I added it to the links discussion on breathing problems which also has a link to a main board discussion. There are several other topics related to breathing issues in the Links Group. b.

Luvspringers welcome! So sorry you are having these complications.

I have had two episodes of more severe breathing problems in the last several months where work of breathing accelerated and accessory muscles were used for breathing to the point they hurt for days. Until I got my pyridostigmine on board and then it took about 45 minutes to work I was working really hard to breathe. What you need at that time is the medication that gives stregnth to your breathing muscles.

Yes some people with muscle weakness also use inhalers. I have reactive upper airways and a tendency towards stridor and my inahler helps me with those things. If it doesn't help you then you probably don't have a condition that it improves.

A blood test helps define the problem with oxygenation. If your sat reading is 96% for instance that sounds good but 96% of what? A person who is anemic will not have as much cells or ability to carry as much oxygen and 96% sat for them will be a lower O2content. It is good to have one blood reading if having problems to compare so you know content and how it relates to your sat reading.

I required oxygen with ambulation and at night for one solid year until I went on pyridostigmine and was able to wean off. They no doubt will want to do an ECHO to see how the heart is working and possibly a stress test.

Hope you find answers soon. Pace yourself....Marie

I agree with B about inhalers making things worse. I was prescribed an inhaler by my PC and had never used it, but recently I was having some breathing problems, and was wheezing a bit, so I decided to try it. Wow, in no time, I was having MG type breathing problems... won't use that again! Took a dose of Mestinon, and immediately rested, and managed to calm it, but it was really quite unnerving.

Linda

Thank you everyone for your valuable and kind input! I feel like this has been a long time in coming, and now that the more obvious MG symptoms are popping up, the quicker I'm going down hill. What concerns me most is that I have 3 kids to care for. My breathing is getting back to the night I went to the ER. Called my doc and she set me up with a Pulmonologist ..........10 days away.
My chest, rib, shoulder and back muscles hurt from breathing so hard. My hands got so weak that I was unable to write. My voice is getting weak and it's all happening so quickly. Can't wait to see a knowledgable doc!!

You asked what constituted a crisis? Here was my crisis. I had been in the hosp for observation and they had started me on low doses of Mestinon and prednisone but I didn't have an appt with a neuro for 3 weeks. My breathing was bad and my swallowing and speech worse. I made an appt with my primary. They took my pulse ox ...100%. Then had me walk 50? Feet. 70%. They then had me get a chest X-ray. I returned in a wheelchair. Admitted to the hospital and intubated that night. I remember only going into ICU and nothing there after. That is crisis. My poor family remembers everything after my admission to ICU....Mary

Wow Mary, you're so lucky you were at your doctors office!! It is scary not having a diagnosis and having your body shut down like that!! How long we're you in the hospital?

ok so this is what you have to do

Go to a better hospital and ER

Don't take this crap

Get better help now

Next time you want a test
Write your request
I bet they will do it.

Thank you Ann! I drove myself at 11:00 at night and it was the closest. Next time Ill know better......def put in writing. When I asked for the test , she said we only do emergency. I chuckled because of lack of knowledge about what a crises is. Pulmonologist next week......hope I can get some help with breathing soon!
Thanks, again!!