Hi Carly,
It's quite unnerving, to have more than one chronic illness.
When these different illnesses have similar symptoms, affecting the same organs?

It's enough to drive you nutty!
It even gets to our doctors!
- Ross

My pulmonologist had still not sorted MG from asthma. Makes them tricky to treat. Best wishes for easy breathing,

Hi Carly, I can relate to you. I had a very hard time of breathing for a while. It came on me very quickly and I actually went to the er three times where they gave me nebulizer treatments, oxygen, and anti anxiety meds. The PA that treated me in er was convinced it was caused from my diaphram not working correctly instead of restrictions within the lungs. Neuro Doc and Pulanologist both have agreed and have treated me with meds and seems to be improving. I am not trying to diagnose you but just offer hope. I can't remember anything that scared me more than fighting to breath. My hopes are with you, Charlie

Thank you all. I'm up this a.m. trying to stay upright so I can breathe better. I was breathing better on Mestinon, but when it wore off it was back to SOB. Now, it's SOBness unless I've done albuterol treatments.
The LF tests show restriction. My saturations are in the low 90s at rest.
I think it is diaphragm and possibly asthma as well. I have myopathy for sure and it's in my paraspinus region on EMG. Not good.
I just hope this is not the beginning of a downhill slide for me.
I've been progressing since 2009 and it just doesn't show signs of stopping. I'm not on any autoimmune drugs yet. Perhaps it is time.
I have tacrolimus in the cabinet that I was told to take by the MD that is sure I have seroneg. MG. My other neuro wants more muscle biopsy testing and UTSW to look at me. I don't feel like I have any more time to waste feeling this lousy/SOB.

Thanks for sharing and listening.
I'm trying to stay out of the ER.
Carly

I keep reading about seronegative MG as if it were somehow a different thing. To be sure there may be unknown antibodies at work, but one study has shown the same antibodies undetected by the commercially available test present when examined using a different method. Since there is no correlation between severity of disease and antibody level, the assumption I see held by so many neurologists that treatment can be withheld or less aggressive seems dangerous. I found steroids eliminate most of my asthma, while MG is much trickier to address. Taking some prednisone for your asthma is a great way, though, to find out how MG responds to get feedback towards diagnosis. Besides you will not need to commit to long term use for a short asthma treatment.

PS (Using my nebulizer does not help my MG related breathing troubles.)

Not sure what to do. See my "frustrated post" and weigh in.
I'm at a loss. Don't want to end up in the hospital. :(

Carly

I went to my pulmo doc today he told me the treason i breath better standing is because gravity helps pull your diaphrame down when sitting or standing. I don't know just repeating what I was told Charlie

Breathing issues are very scary. When I first had the onset of my symptoms in 2009 it was miserable and it was so painful too. It ached so bad to inhale which made my body resist it even more. Please don't hesitate to go to the emergency room though. Did the pulmo doc give you any limitations on how many treatments you could do in a day? The medications used in nebulizers are very powerful. If you do too many treatments it can alter you cardiac rhythm. We warn patients about the side effects of feeling jittery and nervous and it can cause insomnia as well. I hope that it is improving your breathing though. Please let us know how you are doing after your next visit. Best wishes for easy breathing. Hugs to you.

Angie

I was on oxygen for one year and using albuterol more before I was pt on mestinon. I was able to wean off oxygen then and I use albuterol less now and usually related to allergy and feeling closing down. It helps to have a nasal inhaler and a regimen of antihistamines plus allergy shots.

When I feel the slightest weakness in breathing now it is usually I need more mestinon and I take it and it alleviates the problem. The tightness I feel when I need albuterol is different and I am able to tell the difference but I was not able to in the beginning . Due to the way our muscle weakness manifests, I think we all need prn mestinon orders.

My most recent big need for extra mesitnon was after a CT scan with contrast. I asked the nurse to get both my prn mesitnon and my albuterol inhaler...and I would try the mestinon first. It kicked in and I was fine without using the albuterol. Thank goodness drs. have always given me a very liberal prn order for mestinon while in the hospital. Marie

I don't understand how you can say you don't think the breathing issues are related to MG.
I was on respirator......MG for sure.
Does your mestinon help the breathing and does rest help the breathing?