Low oxygen
 

Hi I'm new to the site, but have probably had mg years b4 I was diagnosed. I also have lupus which came probably 10 yrs b4 mg. I'm middle aged female . I try to keep active which I think helps. I was put on 24/7 oxygen a couple yrs ago . As my neurologist has said not many people w/ mg have chronic low 02. I wanted to asked if anyone else here is on oxygen? Look forward to meeting u all and reading ur post. Ty for any help :)

Hi Piper123,

I am not on oxygen, but I have a friend who has MG and is also on oxygen. I am not sure if she uses it 24 hours a day, though. I know she uses it at night, and sometimes during the day, but I think she may not need to use it around the clock. I know she says it has helped her a lot.

Take care,
Erin

I am not on oxygen, but am using BIPAP at night and a couple of hours during the day. This allows my muscles some rest and keeps my oxygen levels up.

Hi, Piper. Which doctor put you on oxygen?

Have you seen a pulmonologist? Cardiologist? It's always good to make sure what exactly is causing the low oxygen saturation. A pulmonologist can evaluate if it's neuromuscular weakness that is causing it. Most people with MG have a pulmonologist to follow them and track any changes.

How low does your O2 go? Have you had an overnight oximetry? A sleep study? ECG? Arterial blood gas?

The other thing that a pulmonologist can look for with MGers is something called atelectasis. It's when a MGer can't breathe in well enough and can have a small collapse of a portion of the lower (usually) lung. Don't be alarmed by that! It's reversible. I've had it a few times.

A chest CT is normally done for MGers after they are diagnosed because some of us have a thymoma, a tumor in the thymus gland. Don't be alarmed by that either! ;)

Did your neurologist put you on any medication?

Plaquenil can be a problem for some MGers. FYI. How MGers respond to meds varies. There are some drugs MGers should not take. Go to Home for more information.

What else can we help with?

There's a lot to learn about MG. For instance, it can become much worse in hot and cold weather, during an infection, while stressed, without enough sleep, after surgery, and loads of other reasons! ;)

Until you get used to the disease, take it easy!

Annie

Low 02
 

Hi Erin, Marijke & Annie
Ty for ur responses. I was beginning to think I was the only one on o2. To answer questions. Yes, I have had all those test done at the mayo clinic and from my pulmonologist. I don't know the name of the one test where u breath super hard in tube several times, but when I did that my arms and legs went totally paralyzed for about 40 min . It was crazy. They also tested me for all the lung diseases which was neg. they never said why I needed it just that I do. It's been a while since seeing a pulmonologist . I feel like if I go they just run every test in the book and than all I get from it is bills. Im on pyridostigmine 60 mg 3xad. I use to be on plaqunil for my lupus but got off it bc I was worried about effects on my vision and it didn't seem like it was helping. I live in VA and have alpacas and Im outside a lot. The heat takes a terrible effect on me. Sometimes not sure if I will make it back in the house , but the give me a lot of joy. Thank u again:)

Low o2
 

forgot to add my o2 has gone as low as 76 but usually when low is around 82

Did they do an echocardiogram, looking for pulmonary hypertension? That's not the same thing as regular hypertension/high blood pressure.

MG can cause more severe breathing issues if it hasn't been treated yet or not treated sufficiently. Mestinon doesn't seem as though it is enough for you. Have they talked about other treatments such as IVIG?

Also, More of a dose of Mestinon isn't necessarily better. Some people, me included, take Mestinon every three hours, round the clock. Speak to your neurologist about tweaking your dose if you feel it isn't sufficient. The drug only lasts two of the three hours after it's taken.

Do you have any side effects of Mestinon?

You have to be more careful outside! Do you take a phone outside with you? Can you keep to the early morning hours when it's less hot? We are getting into fall, but you still need to be careful, especially now when you don't know how bad your MG could become.

It sounds as though you might need another appointment to discuss more help.

Annie

Thank u so much Annie for being concerned and so helpful. Yes I had a right heart catch done to check for PH. The doctor who performed test at mayo thought I did have it, but the head Doctor in charge of pulmonology said I did not. I left confused .this was 3 yrs ago. No I have not talked to my nuero about
Ivig. The mesniton use to give me terrible stomach cramps but not so much now. It's been about 4mo since I've been to my nuero. Don't want to sound hopeless bc I'm def not ,but it seems like not to much helps so I've been putting off going back. Oh and yes I go out in the morning but w husband at work I have to also go out in middle of day to check alpaca and horse troughs. I can't wait for cool weather!!!

Yes, although not diagnosed with myasthenia, I'm on oxygen at night. I have a CPAP machine for mild sleep apnea, but do not use it as it made my breathing worse. I have been breathless for nearly eighteen months and was sleeping only 2 hours a night before waking up with adrenalin rushes. So my doctor prescribed oxygen. I have all the symptoms of myasthenia, but my EMG tested negative.

As I'm learning that doesn't mean u don't have it. What is your oxygen most of time at night. Thank u for responding it really helps to hear other people's symptoms .

Hi Piper123,

I wonder if it would be good to check in with your pulmonologist again? If your oxygen levels are going that low routinely, that sounds like a real concern. You mentioned a CPAP machine. The doctor might want to do a sleep study overnight again. A BiPAP machine might work better for you, to support your breathing better if you are having any muscle weakness. When I had my sleep study, I felt like I was suffocating when I tried the CPAP machine, but the BiPAP/IVAPS machine is very different, and helps me keep breathing at night. It might be worth inquiring about with your doctor. You can also use it during the day if you are having difficulty breathing, which is very helpful, at least for me. I know that it's possible to use oxygen through it, too.

Take care,
Erin

Hi Erin,
Yes I know I need to be seen again. I am glad the bipap machine helps u. I did not mention a cpap and have never had a sleep study done. My friend is a respiratory therapist and mentioned the machine ur on would probably b good for me.thank u again for your response .

I have to wonder if your O2 readings will improve with an appropriate treatment. In the meantime, you really need the advice of a pulmonologist. A second opinion from a cardiologist (by way of an echocardiogram) would be a VERY good idea as well! How reckless of them to not determine if you have PH or not!!!!

Annie

Thank u Annie . I should have joined this board a long time ago. I appreciate ur passion towards my illness. I have thought the same thing, if I just had the proper care I could feel a lot better. Yes I was so disappointed in the doc who was so lackadaisical about me. He made me feel like ,wow maybe I'm just overreacting . That was a while ago. Things have gotten worse and I know I need to start being more proactive with my Health. Ty!