Would it make sense to carry a pulse oximeter to test you oxygen saturation when having trouble breathing? I have same type symptoms as everyone else except for once I have managed to calm myself down/rest until the symptoms were less/under control. If oxygen saturation was high or even not declining over repeated tests would it be accurate to say ok not in crisis? Conversely if real crisis that wasnt going to be brought under control by own actions then wouldnt oxygen saturation be low/going down ?

For me the uncertainty of not knowing is this a crisis or is this something I can control makes it worse.

Stephanie

I just read answer to part of my own question but I figured Id share...accordingly to the document on MGFA website titled "MG A manual for the health care provider" page 51 section 3.5 reads
"One distinctive characteristc of the MG patient during evaluation of respiratory strength is that blood gas or oxygen saturation percentage is not a good indicator of respiratory strength. MG does not interfere with gas exchange itself but the capacity of the chest muscles to support respiration."

sooooo how do we know if trouble breathing is crisis and need ER or if need to just lay down and be cakm?

Good question! When I first started having problems with breathing, I would go to the ER. They would send me to the back fairly quickly, because they could see I was having trouble breathing (if they didn't think it was a panic attack!). But, by the time the doc got there, I was doing much better because I had rested and I was in a place where I felt that if I did stop breathing, they could do something about it so I felt safer.

As time went on and I got more experience, I learned what to do when I'm having difficulty breathing. I've discovered it has a lot to do with any other symptoms I might be having. As an example, if I have a sinus infection and start to have difficulty breathing, I better go the ER since it is probably my immune system kicking in.

If I am having problems breathing because I just took a shower, rest will usually get me back on track. However, if I have several of this type of problem over 3-4 days, I call my neuro because something else is going on.

I guess what I'm trying to say is that everyone has to learn their own body and symptoms. In any case, it is better to the ER than to stop breathing at home!!!

You are perfectly right that uncertainty and not knowing what to do and when to ask for help (and from who) leads to understandable anxiety and can definitely make breathing difficulties worse.

If you are experiencing breathing difficulties/have respiratory muscle involvement you need to have a respiratory consultation (preferably with a pulmonologist with a good understanding in neuromuscular diseases).

You can find (together with him) a parameter which is good to follow in your case.

I use a simple peak-flow meter when I am not sure what is going on. (It seldom happens now, as I have learned to recognize my symptoms fairly well, but I too am not always sure and in the earlier days of my illness I used it a lot).

I have found that for me there is a nearly 1:1 correlation between my peak flow and CO2 level. (CO2 is much more sensitive than pulseOx to changes in respiratory muscles, but it is not checked routinely).

I have made my own chart which goes from: able to breath normally, have slight difficulty breathing which only I notice but not those around me, have more significant breathing difficulties that is noticeable to others when I try to talk, having breathing difficulties that make it impossible to talk, hardly able to breath and becoming foggy-requiring respiratory support.

I have been able to correlate my peak flow numbers and CO2 levels down to hardly able to breath. Beyond that I was not able to perform the maneuver required (so can only guess what it is).

Having this chart helped me significantly in eventually learning how to recognize the different situations and in finding objective correlates (after all I am a physician and need some objective proofs sometimes). It also helped me monitor my response (or lack of response) to various treatment interventions.

I usually try to use my respirator before I reach the level of being foggy and most of the times I am able to recognize earlier signs. although, there have been times when I was no longer able to put on my respirator mask and required someone's assistance.

I can't tell you at what point you should go to the ER, because I personally never do (but I have a mini-ICU equipment at home, so don't need to).
We do follow my O2 sats, but only when I am experiencing breathing difficulties with my respirator and have significant swallowing difficulties which can potentially lead to airway obstruction .

I was only hospitalized during my first crisis after that I have learned learned how to manage it on my own.

Alice - if you dont mind my asking

is Sept 2009 around the time of your early days with MG?
have you been able to maintain full time work schedule?

Thanks
Stephanie

No, I don't mind you asking. But, it's a rather long answer...

Sept. 2009 was not the early days of my MG.

My first hospitalization (with the diagnosis of "MG crisis") was in 2005. ( I had "possible" MG symptoms for a few months prior to that).
After my recovery, I was able (with significant difficulties) to resume full time work for about 2 years.

In early 2007, I stopped doing night calls. A few months later I moved to working half time and started requiring intermittent respiratory support due to recurrent episodes of respiratory failure (according to my pulmonologists).

In the summer of 2008 (after a month hospitalization and treatment which was supposed to lead to my recovery in a large MG center), I became nearly bed-ridden, required respiratory support most of the day, and had to become my own physician (As although technically I was in "crisis", according to the neurologist who took care of me at that time I was in fact in remission and had severe disabling symptoms, severe breathing difficulties and a high QMG score due to "not putting enough efforts" and " emotional problems", I was apparently not aware of. I was sent home to figure it on my own and my GP was told that I should receive emotional support and all involved should be positive. No doubt that he was).

For 10 (very " positive") months I put significant efforts into reading the medical literature and learning everything I possibly could about this illness (not an easy task when you need assistance in almost every thing you do, require respiratory support most of the day and it takes you a few days to read one short paper). But, I gradually figured out the cause of my "unexplained symptoms" and found a better management approach which gave me a few productive hours each day. I then managed to return to work very part time and with a lot of accommodations.

My occupational physician was quite reluctant to let me work at first, but I convinced him that I am in a somewhat better physical condition than Stephen Hawking. And if he can work, why can't I?
After talking with the head of my dept. who said he will be glad to have me back at any capacity, he agreed to give it a try. Initially I did not do any clinical work, but my patients (who were taken care by others) came to ask for my advise and gradually returned to my care. I (and my colleagues) realized that despite my physical disabilities I am still fully capable of making diagnostic and management decisions, even if I need their help in physically doing them. ( I am very fortunate to work with a great team of people who are ready to do that).

Since then I am having a very slow recovery, with a lot of ups and downs. But, have not yet even returned to how I was before this hospitalization in 2008.

For all practical reasons I have 100% disability.
But, I say that I have a severe disabling illness, but I am not letting it disable me. I keep on with my clinical and academic work at my own capacity.

I believe (although I can obviously not know for sure) that had my illness been managed properly from the early days in which I had very mild bothersome, but not disabling symptoms, my condition now would have been very different.

This is why I am putting a lot of efforts into doing what I can to change the way this illness is diagnosed and managed, mostly in less typical and not by-the-book cases. I also encourage patients not to accept unreasonable answers. They may or may not have MG, but they deserve to be treated with respect and given honest answers (An honest "I don't know" is better than false reassurance in my opinion). I think there are many misconceptions and lack of true understanding of this illness in the medical community, combined with way too much overconfidence. This has led to serious and very dangerous errors in my case and I believe also in many others.

Thanks for the response. I do hope you know you have already made tremendous contributions to how mg is diagnosed and treated by the many thoughtful and thorough posts on this forum. I am new to all this but I personally am very very grateful for the information you have taken the time to share on so many of the threads. Information that is not available anywhere else because of your unique perspective and personal situation and circumstances. So from the bottom of my heart, THANK YOU for not letting this disease disable you...you are an inspiration because reality is this disease may be very different and unique to every patient but it sucks for all of us and it is hard to deal with 24/7 but I keep reminding myself it could be worse (I was hospitalized, paralyzed from neck down unable to move and with excruciating pain for 4-5 months...that was the hardest for me).

I hope you have a healthy day!

Stephanie