I don't recall what you are taking. I added 180 timespam when this happened to me. It covered the whole night where as a regular only carried me till 2am and I would wake up with breathing problems. Now that I am on cyclosporine I have weaned down on the time span gradually and now just take 30 when I go to bed. I'm considering keeping just 30mg or even 15mg to keep next to the bed for occasional nights that are harder. It did take a while to break in the timespan initially. Started with half and worked through leg twitches and Charleyhorses. Then increased to 180 and did that again.

like you, I had weakness in expelling breath in this test. I also experience the waking-in-the-night and needing to take a quick breath. Timespan at night has helped that immensely!

I had that test, and I have a diagnosis of asthma as well as MG. The asthma part of the test, tests your lung capacity as well as the basic function of the lungs. The ventalin is a rescue inhaler that helps to open the airways and make breathing easier. Since you did not improve with the ventolin, it is far more likely that your breathing trouble is from the MG. Did you also have to breathe against a balloon type apparatus? That measures your maximum inspiration pressure, as well as your maximum expiration pressure. It is a test often used for MG'ers. I failed that one big time, which is common with us MG'ers.

Because you are having trouble at night, you absolutely should push for some solutions from your doc. I would discuss the sleep study option considering your difficulty at night and the need to take a quick sharp breath.

Also, you are having difficulty walking at night. Time to take another look at your treatment options. Some find the timespam to help, others are better off waking up and taking a mestinon during the night. I take a mestinon just before I go to bed and another during the night. I keep a mesinon and a small bite to eat it with at my bedside. Everyone is different, so be sure to discuss your options with your GP. Hope this helps. Deb.

I have had the test 3 or 4 times.
I had very similar readings. Mine were very inconsistent
One time it came back as a restrictive lung disorder.
Then When I went back it was almost gone?
I also get very tired when doing it and needed a rest.
I do remember she said my readings were unusual and inconsistent. Of course I had no idea about MG at that time?
I am going again in May (hopefully sooner) to see a Lung specialist.I haven't started Mes. yet.
I also occasionally wake up at night with breathing issues..I went for Sleep apnena and nothing was seen.

Thanks for posting and the responses as it helped me as well.
Dan

An overnight oximetry might help define if you are getting enough oxygen at night. It is easy to do as it is just a probe on your finger hooked to a machine that records your readings. I had that done first then the sleep apnea tests.

I like Seattle Writer love the time span in the background and it does help me day and night. I take it BID and the shorter acting I take in the day time as needed per my doctor. I did not realize but I was underdosing and had been noting feeling like I had enough reserve air when I talked or coughed. Now with more of the daytime shorter acting pyridostigmine I am getting better air.

As far as pulmonary function studies the VC and the and MIP are important numbers for us. I am used to going into a pulmonary lab and having RT's do the studies. It is good to know what your norms are as in an emergency the Vital Capacity and Inspiratory Force are monitored carefully.ly.

Also at night if you have reflux it can wreck havoc with your sleep.
Having a good medication for that and elevating the head of the bed can be helpful.

I needed changes for reflux. I needed oxygen for a while. I use BIPAP now with a back up rate and it has helped me a great deal.
Having a good pulmomologist helps too. We had to work through a lot of studies to get me where I am now.

For sure my best effort in testing is often my first. It is good to explain to testers we often give diminishing returns over time but most of the testing requires three tries for comparison. I ask during the testing for rest periods. It isn't a marathon or is not supposed to be and it is ok to rest between the efforts.

Hope you get some answers! Marie

Thanks Maria excellent info! Good questions to ask before my Lung doctor appointment..thanks Again!

Thanks everyone for your replies and advice - its just a bit scary to think that my lungs are becoming fatigued....as it is for you all too!!

I don't take timespan, just 60-120mg mestinon 4x per day.

I didn't have the balloon thing Deb?? That sounds like hard work, especially with asthma too, bless you!!

I hope you get your tests quicker Dan - fingers crossed!

Greenmarie - thanks for the information, I don't have a cop of the results as they don't trust us with them here in the UK! lol!! But I will be seeing my GP to follow up so I will keep everything you said in mind - thanks again!

Thanks again everyone :) x

Hi! - get an Arterial Blood Gas test too. Many times, you can have normal oxygen levels, when measured by a pulse-oximeter.

Yet - you can have too high a carbon-dioxide reading.
Due to poor diaphragm action.
The lungs are not cleansed of carbon-dioxide.

When there is too much carbon-dioxide, in your bloodstream?
It's entirely possible to have some scary breathing issues.
Shortness of breath, rapid breathing.
Thinking of you!

Thank you! That is good to know :) I left a message for my GP yesterday and was hoping for a call and maybe some feedback from her, but I haven't had a call :( I will make an appointment to see her and mention this to her :)

I'm glad I have you guys as I don't know where I would be without your knowledge, advice and general support!

Thanks again.x

If possible, I try to do any test at the end of my mestinon time cycle. PFT will lower on each test for me. The most help is an old test called the MIP. My bi-pap help with exhaling, especially at night.

Mestinon Time Span helped me out very much, I also had a sleep study and use a CPAP and I can definitely say if I try to sleep without the machine I wake up a few times during the night as you do, with it not so much.

Thanks again everyone - my GP's receptionist called to say that she was pleased that the Spirometry was normal from an asthma/COPD perspective but she understood my concerns on my result. Unfortunately, she doesn't know what it means and I am going to see her Tuesday to discuss what we do - she mentioned either writing to my Neuro to ask for his advice on whether we should be worried and how to manage me or referring me back to him.

I'll keep you posted! Thanks again everyone! :) x

Thanks unsure:

I too have had 'normal Spiro results' but am trying to get more tests
from a MG perspective. Your update was very helpful.
I also have had high normal levels of CO2 in my blood for years but no one has cared - now I think I have the reason why..as postulated in another post Mg'ers sometimes can't expel the Co2 ...hoping to get some answers soon..Dan

Hello there... sorry that I'm only seeing this now. When I worked for an internist in NC, I use to do the PFT / Spirometry testing with asthma patients. The results are based on your age, height, weight, whether or not you smoke and race (believe it or not).

It doesn't matter what your diagnosis is really. Most people produce the first breath as their best reading. The biggest thing to watch for is how much is slides after each "good" breath. It should be slight for those with no breathing issues. For those with asthma, it tends to be difficult for them to get enough air in to expel it well. Same goes for those with COPD or restrictive lung disease. For those with MG the greater difficulty is getting the air out forcefully enough for it to be an "acceptable" reading. It then gets worse with each attempt by drastic measures. Those with MG will not usually improve after the nebulizer or inhaler treatments where those with other breathing issues will improve greatly.

The other thing that is important with these tests is it's highly dependent on the technician being able to instruct the patient on the proper way to inhale and exhale throughout the procedure. I had to be specifically trained to administer the tests and keep up my certification to do so. I think if it was done by a respiratory therapist you are probably good to go. I'm not sure how well nurses are trained to do this type of testing so I can't speak to that but it worries me that she doesn't understand the results. In my opinion, it sounds consistent with MG. I haven't done these tests in about 5 years though and my opinion here is probably not worth a lot... lol.

With regard to your night breathing issues, your best bet is probably to do the tests as Green Marie stated. I actually have mine scheduled for tomorrow night. It's an in home study so someone will come out and hook it up then pick it up the next day. It's just a little device that they tape to your finger and has a computer chip that allows them to read the data afterward. That is just a screening test to see if you should have a full sleep study. I haven't woken up like you do in quite a while and I'm happy for that. My carbon dioxide is frequently elevated in my blood work and I know that my oxygenation drops a lot when I sleep so I will probably end up doing the sleep study too but we'll see.

Good luck to you. Please keep us posted. I hope your breathing easier very soon.
Angie

Thanks Angie for your great post.
I am heading back to a lung doctor to get to the bottom of my breathing issues. I have mild restrictive lung disorder that fluctuates but I'm not sure if it is connected to MG ?!Also have high C02 in blood.
thanks dan