That´s precisely it. Three weeks ago was the first time during one of the few hour bouts of restrictive breathing that I actually thought that I might soon have problems breathing on my own. At the time I had bad double vision as well as micro aspiration problems. Mestinon fixed the breathing and the double vision. Since then I´ve felt that breathing muscles are back on auto pilot again and a 2 months spell of coughing appears to be over.

If I fly to another country to see a pulmonary specialist will anything show up on the tests if the appointment ends up coinciding with a remission like we all know can sometimes happen?


Thanks, as always.....

Anacrusis

If you are truly in remission, the tests will (obviously) be normal.

But, if you have active MG affecting your respiratory muscles they will not be normal even on what seems to you as a very good day.

Can you walk the distance a normal person your age can without any breathing difficulties? Or do you rejoice with being able to walk a few blocks?

I know that there were many times in which I thought I had significant improvement, but trying to do something requiring a bit more effort, made me realize that it was mostly my adjustment to this level of activity and not true improvement.

I do hope you are in remission and don't need to see any specialist (other than one hematologist who likes to use silly icons ).

I just don´t know!

I´m starting to get a little confused by it all now because I´m not sure if it´s maybe just positive and not realistic thinking! I don´t have any detailed stories of how remission works. I know I´ve now got 100% use of my hands back but that has now taken a year and a half and I can now actually grip something and crush it. Grip strength and finger dexterity is no longer fluctuating. But yet when the newer more recent bulbar and ocular symptoms present and fluctuate I am always so sure that this time really must be the last time with those symptoms as well, and it usually isn´t.

About 3 weeks ago I had a flare up with breathing/vision/swallowing problems could climb only 3 steps before getting breathless, then 2 days later it was about 20 steps and on the 4th day about 70 which was unbelievably close to my 2004 level of fitness which was above average for my age. Zero Mestinon this week and the matching zero degree temperatures outside are working myasthenic miracles. It felt like on day 4 I had wriggled out of a myasthenic straight jacket but didn´t dare speak too soon. So if the pulmonologist´s appointment happened on a´day 4´ it would obviously count as remission and yield little results.

Nothing now is as gruesome as it was 2 years ago and what has also thrown me completely is that on day 4 I got a taste of my original energy level from 8 years ago - which I never thought would be possible in my lifetime.

How did that happen? Even if I get fluctuating symptoms back, being able to have accessed that original energy state must have meant something?

So maybe now after all my posts on brain/memory threads I might need to join another forum and actually leave this one! And if that´s the case I would so miss that special way those silly icons are only used around here.....

Anacrusis,

I am not a medical person. Just a person who has had MG for about 10 years and have been hospitalized for two MG crises and aspiration pneumonia due to MG.

Of course, my pulmonary specialist "saw" much when I had the above issues. And my follow-up appointments with him following my recoveries must have "showed" him some things.

It has been three years since I have seen this specialist. The last time I saw him he said I did not need to come back unless I was sick again or another doc thought I needed to.

My neuro, endo, and internal med docs all "listen" to my lungs when I go to appointments. Internal med took x-ray a year ago when he thought I may have had pneumonia. They all say I sound "good" - except when I had the "possible pneumonia" - which sounded like a "rattle" to the inernal med doc and did not feel "heavy" to me. (I had bronchitis)

Am I in total remission? No.

Do still have occasional breathing problems? Yes.

Would my pulmonary doc "hear" something different today - now that I am not in crisis but still have MG? I don't know. He may not - because currently I am not having severe breathing problems. But I still have MG.

Anacrusis, as you know, I am new to this group - not new to MG.

Why would you fly out of the country to see a specialist right now? Just wondering. In my non-professional opinion if you are not having symptoms when you see him - he may not "see" anything.

A new Inquiring Mind would like to know. (new member)

p.s. Cold weather helps my breathing also. Although I do not live in zero degree weather.

In fact, one time a doc told me (I forget which one) that if I was having breathing problems - to try stepping outside into the cold weather. It did help. That was not however, when I had my crisis. And I believe I was too weak and too ill at those times to even (remember) or (think) about doing that.

.....Because when you have back problems you go to a chiropractor, when you have vision problems you go to an optician, when you have toothache – the dentist.

When you have fluctuating breathing problems like the following who do you go to?

• Periods of 4 hours where breathing muscles feel like they´ve lost their elasticity and diaphragm is moving like 2 wood planks together
• Fluctuating voice changes
• Saliva is leaking into lungs with 11 months of coughing then a stretch of 2 months of coughing
• Small particles of food stuck in esophagus for up to one hour
• Choking on vapors and last week the cappuccino powder!

Etc etc etc etc.

Well I think I´m done with it all since a couple of weeks – wouldn´t that be so lovely?
But if those symptoms do come back I would like to know what my chances are at a pulmonary specialists in case I did get my timing with my unpredictable fluctuations all wrong. I´d have to start somewhere. But yes I see what you´re saying about this in your post!

Thanks for the great description and for sharing. Also I did not know the rattling in the lungs that I´ve had too was a ´valid´ symptom - until just now!


Anacrusis

Thanks Anacrusis for the explanation.

After reading your response - perhaps a pulmonary specialist would have insight (even greater than other physicians) into your problems - regardless of where exactly your MG symptoms might fall on the "spectrum".

I missed or mis-read Alice_MD's response. Alice is the MG patient and a medical professional (MD). Between your response and her response - well, I agree this is truly strong possibly and a big decision for you to make.

Anacrusis, the "rattle" in my lungs the doc thought he had heard - was a "possible" pneumonia sign - so my doc had to check it out. My doc seems to be very careful with me - since seeing me so ill at times with MG.

Wish had better answer(s) for you. Good luck.

Soft Hugs from SoftTalker

Anacrusis . . . breathe!

It still boggles my mind that you can't find a pulmy in your area. Shame on my ancestors! Have you called a hospital close to you to see if they have them?

I can't say whether spending money to go somewhere else for a pulmonologist is a good idea. I don't think I would do it.

But here's the thing. If you can find one "in country," a pulmy can do a number of things for you. They can determine what you baseline readings are, which is useful for when you get worse. They can determine what kind of breathing problem you have. Yeah, there are many kinds. With MG, it's normally a restrictive breathing pattern. They can run an arterial blood gas (ABG) if your breathing is pretty bad, to determine how that is affecting your blood chemistry (i.e., carbon dioxide).

Here in the U.S., pulmonologists are the ones who work WITH neuros in a hospital when a patient is having an MG crisis. That's why I find it very odd that you couldn't find one there to help you.

The tests they should do are not just "regular" spirometry but full spirometry and also MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). Those tests are specific for how well you are doing at breathing in and out. If you have never had those done, the results might surprise you! An MGer can be okay at one and not the other.

SoftTalker, Do you have a more informal name? Just wondering. Anyway, it's nice to meet you. The colder weather helps me too but not cold weather. I get just as weak in cold as I do in hot. I'm sorry you've had 2 crisis'. They are quite scary and it takes so much longer to recover.

Anacrusis, What you describe sounds like MG. MG is all about fluctuating muscle weakness. And a pulmy can assess that and make recommendations about potential sleep apnea. They could also do an overnight oximetry to see what your O2 is while you sleep. It can go low without you having sleep apnea. It can be from insufficient MG treatment. Mine went to 66% during a mini-sleep study during my MG crisis, where I slept less than an hour. Who can sleep well in a hospital?!

Even if you fly to another country for analysis and diagnosis, you still need doctors at home for ongoing care! So work on finding a good pulmy close to where you live, in case you do go into a crisis!


Annie

[QUOTE=AnnieB3;927365]

But here's the thing. If you can find one "in country," a pulmy can do a number of things for you. They can determine what you baseline readings are, which is useful for when you get worse. They can determine what kind of breathing problem you have. Yeah, there are many kinds. With MG, it's normally a restrictive breathing pattern. They can run an arterial blood gas (ABG) if your breathing is pretty bad, to determine how that is affecting your blood chemistry (i.e., carbon dioxide).

Here in the U.S., pulmonologists are the ones who work WITH neuros in a hospital when a patient is having an MG crisis. That's why I find it very odd that you couldn't find one there to help you.

The tests they should do are not just "regular" spirometry but full spirometry and also MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). Those tests are specific for how well you are doing at breathing in and out. If you have never had those done, the results might surprise you! An MGer can be okay at one and not the other.

Anacrusis, What you describe sounds like MG. MG is all about fluctuating muscle weakness. And a pulmy can assess that and make recommendations about potential sleep apnea. They could also do an overnight oximetry to see what your O2 is while you sleep. It can go low without you having sleep apnea. It can be from insufficient MG treatment. Mine went to 66% during a mini-sleep study during my MG crisis, where I slept less than an hour. Who can sleep well in a hospital?!

Even if you fly to another country for analysis and diagnosis, you still need doctors at home for ongoing care! So work on finding a good pulmy close to where you live, in case you do go into a crisis!
Anacrusis - Annie has some very good points here!

I realize that Annie and I live in the United States - and health care access and treatment is different from that in Europe.

(And health care can vary from state to state - here in the USA.)

We both wish you the best in your search for better, sustainable health!


Annie asked me:

SoftTalker, Do you have a more informal name? Just wondering. Anyway, it's nice to meet you.

Yes, Susan - but I go by Sue.

Nice to meet you Annie and Anacrusis - and everyone else.


Annie also said:

The colder weather helps me too but not cold weather. I get just as weak in cold as I do in hot.

I am the same Annie. I like it cold but not too cold.

But I do prefer to add layers and turn on the "heat" to taking off layers. LOL - can only take off so much. I don't like to spend a lot of time in air conditioning - but I do - when I must. I seem to be much more heat intolerant than intolerant to cold.

Annie said:
I'm sorry you've had 2 crisis'. They are quite scary and it takes so much longer to recover.

Thanks, Annie. Yes, they were Very Very Scary - for me and everyone else. Very rough on family members and close friends. I have been fairly stable with MG now for more than three years - and I have learned to take care of myself and to listen very carefully to signals my MG body sends out.


Good luck Anacrusis.
Let us know what you decide - and how you are doing.

SoftTalker (Sue)

Thanks MUCH

Am also just adding some info here that Alice already mentioned in a thread about problem breathing: