Some time back I posted about my situation. I have had double vision for about 3 years. My neuro-opthalmologist also found a droopy eyelid and I've had muscle weakness in my legs. Blood testing was negative for antibodies. A single fiber EMG was inconclusive--not normal, but not typical of MG.

I've also had considerable shortness of breath. My lung function workup showed I have weak breathing muscles and hypoventilate. A sleep study found I have more Central Apnea incidents than obstructive apnea incidents, and highest of all are hypopnea incidents. My lowest oxygen saturation was 61 percent and I had 95 minutes of time (out of 506 minutes) when oximetry was less than 89 percent.

Has anyone with diagnosed MG had similar symptoms? I'm still wondering if I might have MG. See the neuro-opthalmologist for my next appointment in two weeks.

Susan

I have been diagnosed with MG. I have double vision, prisms really help. I also have a droopy eye lid, muscle weakness mostly in the legs, but the arms and face too. My antibodies are negative but my SFemg is positive. I have shortness of breath, it is much better now that I am on prednisone and mestinon. I have not had any pulmonary studies. But I often have the sensation when I sleep like my throat closes, I make a weird sound and then I wake up and it goes away. I need to follow up on that.

Were you on mestinon when they did the SFemg? Were you having a good (strong) day the day of the test? What muscles did they test?

I made sure when I did my SFemg that I had been off mestinon for a week, and the test was in the afternoon so my muscles were more fatigued. They tested my eyes which are very symptomatic.

kathie

My neuro-opthalmologist hasn't prescribed any medication. He said the steroids would be bad for my diabetes and he thought I'd be better off with just the prisms to correct my double vision. At my second visit, when I complained more about the limb weakness, he decided to send me for the SFEMG and a pulmonary evaluation.

Mr SFEMG was at 8:30 in the morning. They tested my legs, arms and a spot on my forehead. I was tired from walking into the hospital from the parking lot.

Sounds like you might benefit from a sleep study. You may find, as I did, that you have sleep apnea. The sudden wakening after a funny noise that you make is one of the symptoms. Especially if you have daytime sleepiness.

Thanks for responding to my post!

Susan

I had a sleep study done but although it was abnormal it was not bad enough to treat. They found my O2 level dropped into the low 80s during REM sleep but I did not stop breathing. It is important to note that I had a very restful night and slept better then normal the night of the study.

I also had a pulmonary function study that was boarderline. They will retest me next year or if my breathing worsens. I have a pulse oximeter I use on nights my breathing feels difficult. I ordered a wedge to elevate my head at night and find it helpful as well. I also have tightness in my throat like someone has their hands around my throat. Taking an extra mestinon in the middle of the night usually helps these symptoms
Sandy

Thanks for your response, Sandy.

Hello! I don't have a firm diagnosis.. just something neuromuscular that does respond to IVIG.. without IVIG my pulmonary function tests go down, heart rate up, weak, droopy eyelids etc etc..

I had a sleep study done not too long ago- it showed something like 19 hypoapnea events, and then 9 other breathing events (cant remember what they called it).. my o2 sat went to 87% for a few seconds - they think it was artifact.. otherwise it never went below 92%.. they said my entire study was "normal" apart from my restless leg as soon as the lyrica was wearing off..

Did they talk to you about Bipap at night time with your results?

I think I have some nights where I hardly have any issues.... and then others where I wake up with a noticable headache (though I cant be for sure if its from neck pain, or IVIG or what the cause).

Good luck!

I have been prescribed a CPAP. BiPAP is more expensive; insurance will only pay for it if a CPAP doesn't work. 19 hypopnea events and 9 others is similar to what I had...but my oximetry was clearly abnormal.

Thanks for your response!

have you tried the Cpap? DOes it seem to make you feel better? When I was having an exacerbation a few months ago and I think my night breathing was pretty bad, i was SOOO exhausted in the day time.. fell asleep the second I sat down etc... but now am totally fine again as far as that goes..

the hypoapenic events I was curious about - my dr said it was all normal.. but do "normal" people have any of those events?

My PFT's are usually in the upper 80's since I started IVIG - which is quite a bit better than they were when I got admitted into the hospital. (I had scoliosis surgery as a kid, so the couple of times they have tested PFT's before i was "sick" they were bad.. so I think upper 80's is normal for me).

Hope your getting some relief.. are they going to start you on mestinon or something?

Still waiting for my CPA to be delivered. My pulmonologist only works in the office part of the week--she teaches at the University as well. I'm hopeful they will get the prescription, insurance authorization and deliver it tomorrow.

The tech at the sleep center said my polysonogram showed I had "severe" apnea...but my research puts 28.8 incidents per hour at moderate--the threshold of "severe" is 30. They counted the hypopnea events as well as the central apnea and obstructive apnea events. A total of over 5 events puts you in the mild apnea range. 5-15 is mild, 15-30 is moderate. 30 or more is severe, per my research. In addition, I had 14 on the sleepiness scale. Over 12 is severe on that I think.

My PFT's were normal. I have some hypoventilation from what my pulmunologist called "weak respiratory muscles." With that and the hypopnea I was wondering if it could be the MG affecting me.

I go back to the optho-neurologist in two weeks and am going to ask him about trying mestinon. I'm thinking he won't diagnose me with MG because the single fiber EMG wasn't conclusive.

Susan

Those numbers sound familiar (i dont' know where my sleep study paperwork is right now)... but I think I had a 4 or 6 on that scale that abnormal was above 12... It still freaks me out as I imagine a "normal" healthy person doens't have any events like that!


good luck with your apt! I hope they will let you try mestinon... I only do IVIG... without it I can't breathe, move etc... I was a mystery diagnosis and then I crashed about 2 years ago now.. ended up in the hospital for a week and thats when they started IVIG... and i've done it ever since.. but they still don't really have a firm diagnosis.. fun fun! :0