Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

1,709 Members
7,414 Posts
0 Online
Muscles & Bones
/ Myasthenia Gravis Support Group

Update and questions

Tesinato
Tesinato
So I had to cancel my Neuro appointment due to insurance reasons, but I did however get to see a regular doctor Thursday. We went over my history, and while he wasn't overly familiar with MG, he was willing to do research to better help me, and got me setup with a new neuro place that I have to call Monday. In talking with him however, he realized that my left lung, half of it is collapsed. I already figured that by my x-rays from the ER visit last month, but he went through my records and confirmed it. So he has me now going to physical therapy starting Tuesday, and I'm a bit concerned. My lungs already have issues, so is it wise for me to be working them harder? Is there any suggestions on what I should say to the PT doctor as to how to care for me with MG? I don't want to make a huge deal about it, as I understand PT is going to push my limits, but I don't want to end up in crisis over it if I can avoid it. The doctor's goal in the end, is to see if he can get the half part of my lung to re-inflate. I don't know if it is possible or not, but I'm willing to try. Fact is, by the one second breathing test, I'm in bad shape to begin with. So any advice on how to handle this would be great. Thanks again for all the support and help, it really is greatly appreciated. :)
jeanniea
jeanniea
He is probely sending you to P.T. to have some positional things done and some percussion(tapping/pounding) done on you chest?
Did he explain this to you?

You will meet with the theraoist before they do anything for an eval. Bring the description of MG issue with you. Particularly about weakness and fatigue with exercise, and something explaining Mg crisis too. Something your sure to find fronm the MGFA web site.

If you feel uncomfortable with what they are doing, tell them and talk to your doc again. He sounds willing to do research and help you.

Good luck!
mgadvocate
mgadvocate
Do you have a pulmonary doctor? Has anyone told you why your lung collapsed? Having lung problems inaddition to MG is not good.

I would get an appointment ASAP with a pulmonary doctor. P.T. may help but it would be helpful to have a pulmonary doctor.

Wishing you the best.

Bruce
cgreens
cgreens
I like what Jeannie has said. Perhaps more will chime in...I too would be asking people here for any guidance. Sharp people around here!

I don't know the protocol for collapsed lung, but I am sorry you are going through this stuff. Having lung issues with MG is not a good combination. I hope you find some comfort soon.
TJ
Tesinato
Tesinato
Well the collapsed lung hasn't really given me much issue aside from me having to breathe shallowly. I do deal with chest pain everyday, but I'm not sure if that is related to it being partly collapsed, or something else. No one has told me why it happens. I just know relaxing my breathing, and the muscles help, like a shower, or vapor rub should I not be able to do a shower.

I don't have a pulmonary doctor no Bruce. I'm just starting with all this, so to be fair, I'm not overly sure what I need help with aside from my MG. I had assumed the lung problem was caused by MG, but I wasn't 100% sure.

Thanks jean, I will do that. I wouldn't of thought of doing that.
mgadvocate
mgadvocate
I do not believe MG can cause a collapsed lung. I believe it is important to find out what is the underlining problem. You should call your doctor and ask him what is going on with your lungs and if you should see a pulmonary doctor.

It sounds from your post that you may have had history of breathing problems. I'm just concerned that P.T. is not going to help if you have any serious underlining problems.

Bruce
Tesinato
Tesinato
I've got so many underlining problems, it is hard for me to ask. I really worry about sounding crazy. I will however ask him next time I see him if I should see a lung doctor or not. I probably should, just because of the 38% lung capacity, but I kind of felt like it was something that was irreversible. Seeing as the doctors 8 years ago didn't seem really proactive about it, I just blew it off to be honest.
cgreens
cgreens
Unknowns for you still. Keep us posted.

I was reading:

"A small pneumothorax may go away on its own. You may only need oxygen and rest. The health care provider may use a needle to pull the extra air out from around the lung so it can expand more fully. You may be allowed to go home if you live near the hospital...

If you have a large pneumothorax, a chest tube will be placed between the ribs into the space around the lungs to help drain the air and allows the lung to re-expand.

The chest tube can be left in place for several days. You may need to stay in the hospital. However, you may be able to go home if a small chest tube is used.

Some patients with a collapsed lung need extra oxygen.

Lung surgery may be needed to treat your pneumothorax or to prevent future episodes. The area where the leak occurred may be repaired. Sometimes, a special chemical is placed into the area of the collapsed lung. This chemical causes a scar to form."

"Outlook (Prognosis)

If you have a collapsed lung, you are more likely to have another one in the future if you:

Are tall and thin
Continue to smoke
Have had two collapsed lungs in the past

How well a person does after having a collapsed lung depends on what caused it."

http://health.nytimes.com/health/guides/disease/pneumothorax/overview.html
catnap2
catnap2
Jeannie said it just right. Definitely PT provides what is called Chest PT which is designed to help clear and improve your lung function. Definitely take the information from MGFA with you and talk to the PT doing your evaluation. If they are a good therapist they will appreciate any information you can give them.

Definitely you need to see a pumlonary doctor.

Let us know how it goes.
Cathi