I am having terrible tightness in my sides, I guess the intercostals. It hurts to take a medium breath. Does myasthenia crisis start like this?

I saw the neuro on Thursday. She was alarmed at my breathing and ordered another round of IVIG. I could only count to 8.

Please let me know if you had a similar experience.

thanks
kathie

I get a terrible tightness in my sides quite often, especially when I lay down at night. I do not go into a crisis as a result of it. If I just lay down and rest, it gets better. I hope it works out ok for you.

I would definitely be very careful- If you can only count to 8, that is really low. I'm sure your doc told you to go to the ER if your breathing worsens. Don't delay!

Good Luck and hope the IVIG helps - It always helps me.

Juanita

I get chest heaviness when my breathing gets affected.. feels like an elephant is on my chest... when I cough or something though it will feel like muscle pain around my ribs- a weakness pain sensation... sometimes the tightness is intermittent and helped by rest,, but always helped by IVIG. . Hope you are feeling better today!

I just got back from my sleep study. They said I had sleep apnea and would be back for my sleep study with a c-pap next week. i hope this helps with the fatigue. The pulmonologist says that this is not normal obstructive sleep apnea, but due to muscle weakness from MG.

SO next week they are going to ask what type of mask, etc I want. Please give me your suggestions for what works best, what accessories to ask for and anything else I need to know.

Thanks,
kathie

When I was first diagnosed for sleep apnea, I asked for a full nose and mouth mask because I didn't think I could handle the plastic things up my nose (that's how I thought of it)! However, I found out that for me the face mask leaked air all the time and I never could get a good seal so I had air blowing on my face in different places and the sound of air escaping. Really didn't like it. Almost gave up but decided to try the nasal cannulas after talking to my doc. Success!! The "Plastic" is a really soft material and the nasal pillows really seal well so there is no air leakage.

So, I would recommend the nasal cannulas. They don't really go inside your nose, just sit at the entrance.

Good luck! It made a lot of difference for me.

Juanita

Be sure to ask for a humidifier. I had a non invasive nasal mask that I like really well that had either the nasal pillows are a small nasal mask, but they discontinued it so I couldn't get another one. The next best thing is called a wisp. I believe it is a respironics product. It is a pain to take off and on, but it seals very well and not as invasive as a full mask. I tried the full masks, but had huge leaks with every one that I tried.
Hope you get a good fit because the mask is everything when it comes to cpap therapy. Another thing, is that they usually fit you sitting in a chair, but it is a totally different thing when you lay down with the mask on.
I would also highly recommend that you get some type of hose retainer. I run mine through a larger stretchy headband that is like a giant rubberband, then I hang this on a plant hanger that is mounted on the wall behind my headboard.
It keeps the weight of the hose from pulling at your mask and making it leak and the rubberband has enough flex in it to allow you to turn over, etc. without pulling at your mask.
Also, if you do get a humidifier, you will need to get/make a cover for your hose because the temperature difference in the room can cause rain out that will drip on your face and wake you up. Hope this is not TMI, but is just some of the things I learned the hard way.

Thank you both, you have been very helpful,
kathie

So I have been doing some reading on C-pap vs Bi-pap. And I read that MGers do better on Bi-pap because Mgers tend be be worse on the exhale vs the inhale and Bi-pap supports both. I know I am much weaker on exhale. Does anyone here use Bi-pap?

My sleep study score for apnea was 22 which is moderate. I am still waiting for the complete report. I am very interested in what my Oxygen levels did.

Let me know what you think about C-pap vs Bi-pap.

thanks again
kathie

I don't use anything right now, I do remember reading that the B-pap was better for MG.