Jana

Do you know what tests a pulmonologist would do with bulbar symptoms related to MG rather than those for pathological swallowing problems?
I know having a grain of rice lodged for 45 minutes is not normal and nor is choking on saliva/a surprise gush of juice from chewing a piece of fruit. But I couldn´t guarantee presenting with those symptoms at the exact time of an appointment for inspection since they come and they go. That could put me off going. (Here I´m talking about initial appointment and not ongoing care)

Anacrusis

PS....

I havent' been to a pulmonologist yet, as the Neuromuscular clinic does PFTs (pulmonary function tests) at the clinic.. They do a FVC (forced vital capacity, i believe is what it stands for).. I like that they do that each appointment, so that I have concrete numbers that I can track... When I feel like I can't breathe, usually they are low.. however my pulse ox remains good..
Im sure an actual pulmonologist would do more tests even - PFT's, and something called a snif test or something - I believe it tests your diaphram strength?
Of course they have swallowing studies - barium swallowing I believe to test that part of it..

Its so anxiety provoking not to be able to breathe, so getting those numbers is really useful I think.. mentally too!

Ok, I hope I get this RIGHT.........if I don't, there are several people here who can add to/fix the info I'm gonna give!!

There are several tests to measure the muscle strength of an MGer:
VC -- Vital Capacity
NIF -- Negative Inspiratory Force
MIP -- Maximal Inspiratory Pressure

You need to get at least one of these tests done as a "baseline" on a "good" day. That way, IF/WHEN you have respiratory problems, you (and your medical team) will have something to compare it to.

WHEN you are having trouble breathing, O2 saturation is NOT a good measurement for MGers. You know that finger "thingy" they put on you? An MGer can appear to be FINE as far as their oxygen levels go -- and ACTUALLY be about to go into crisis. ABG (Arterial Blood Gas) is FAR more accurate for us -- it shows CO2 (Carbon Di-Oxide) levels which build up because our muscles are too weak to EXPEL air properly. For example, I can inhale "ok" -- exhaling is HARD.....as in blowing up a balloon!

I have all of this info in my purse so that I can REMEMBER to ask for a VC or NIF and an ABG if needed. I also have info about trying a CPAP or Bi-PAP first -- before intubation. Even if I can't talk, I'm gonna be pro-active!


A problem I have (and more often, recently).....I am sniffing at the same time as I swallow food (allergy season, here). YIKES!! Food is trying MIGHTILY to go into my lungs. I can FEEL it. SCARY!! Also, everytime I throw up (and I've thrown up SEVERAL times this year), food comes out through my NOSE! Painful AND disgusting!! And, when I take my pills at night with a little water, once I FINALLY am able to swallow the pills, water comes out my nose. YUK!!!!

My MG doc appointments are always in the afternoon. I suspect he wants to see the "real" me -- the weaker me. Perhaps you could make a pulmo appointment later in the day?

have you tryed a nebulizer? you should ask you dr. about it it dose a grate job for me when my breathing gets real bad,I have copd there are also some aromatherapy stems that will help if mine is not super bad I use them insted of the nebulizer. I make all my own natureral steams,face masks,body lotions,and body scrubs,it's fun to do and they work much better the the crap you get in stores,at least I know what is in them no cemicals

I´m quite sure you did as great a job with this as you did with your recent carotid sinus syncope suspected diagnosis!!!!!

Is it the barium swallow then that is the only swallowing test related to MG?

Yesterday for a change I was choking on balsamic vinegar fumes again´catching´in the lungs whilst eating a salad. How the heck can something like that cause such a disruption?! At lunch it was a strange feeling catching the eye of a colleague who understood more than I wanted him to whilst trying to disguise it all as a normal cough - but he knew. The only time I´ve had that before is whilst taking non-MG friendly medication and it stopped when I took it away. But now there is nothing left to´take away´.
I´ve had a´taster´of most sensations except the food and liquid back up the nose which sounds like a full time job - you seem to cope so well Jana....

By the way I used to have predictable weakness in diurnal fluctuations but now it´s heavy plank breathing four hours for some days and surprise choking here and there throughout the day most days and of course the never ending non-productive cough which has also now decided to be unpredictable. In our European health system you have to get your timing right as you get one shot at it and if symptoms don´t present at the appointment you basically go to the back of the line! If you get a decent doc abroad you still have to get your timing right. So maybe I´ll wait til it gets worse or maybe even better....

I think you may have 2 really good points there Ms bny806

PS wild_cat I do hope you are getting closer to some tests - as you need them asap NOW!

Anacrusis, I don't know if I cope so well (but, thanks for saying so).......as much as I have LEARNED to discern life-threatening from merely annoying symptoms.

"In our European health system you have to get your timing right as you get one shot at it and if symptoms don´t present at the appointment you basically go to the back of the line!"

I find this quite frightening -- and hope and pray that you DO present with horrible symptoms AT your appointment(s). As much as Americans grumble and complain about our health care system, we don't have this problem.

BTW, "if" I said anything right, I CANNOT take credit. I have learned SO much from SO many MGers along my journey.......so kind and willing to share their wisdom. It is the very least I can do to pass along what I have gleaned from all of them.

OK I promise I won´t give you any more credit!!!!

Our system is great for something like paid maternity leave. They pay you to take many months off work to look after your newborn. It´s wonderful on many counts. The system really looks after children. With something less specific like MG they are just as lost as you are and you suddenly find it´s hard to move anywhere especially (I think) for an adult female - there are minimal options to choose from and that is how it is. You need to play detective and then psychologist once you find someone that has the power but not the knowledge to help you! Money is not an object for everyone but we do pay high taxes for the free health care and in my case I have payed 3 times over.
1) taxes
2) accept part time work without diagnosis
3) travel out of country for suspected diagnosis from private neuro

If you take tests with a pulmonologist before Mestinon and then again after and the second set of tests show there is a significant improvement....would that actually be accepted as the most objective measuring system for Mestinon´s efficiency?

response to mestinon/tensilon/neostigmine etc. is seen by some neurologists/physicians as diagnostic of MG and by others as a "non specific effect".

Look at the " Alice reflects" in the 2011 summer and autumn issues. https://www.mga-charity.org/newsletters

Thanks I also particularly liked the 2012 Autumn issue.....