I do not have a firm dx yet. I started having double vision in may of last year, off and on, and went to see my opthomologist. He sent me to a strabismus specialist who suspected either thyroid eye disease or Myasthenia gravis. She ordered basic blood panels for both and they were both negative. I have two autoimmune conditions already ( Psoriatic Arthritis and Interstitial Cystitis), and because of some of the immune meds I have been on in the past (Humira, Enbrel, Remicade) that can bring on MS, My Rheumatologist became concerned, and ordered an MRI of my brain to rule that out. I was also having balance issues at the time and some slurring when overly tired. The MRi was normal. So he then sent me to a Neuroopthomologist. I have been on a trial of Mestinon, with some effect but didn't help much, and gave me horrible stomach cramps, so now I am waiting on EMG studies that are scheduled in May. The double vision is getting worse, and now have had several times where it feels hard to swallow. it is very slight, but it feels as if my food is too big and too dry, when I know it isn't. So, for now, I am just trying to take note of all of my symptoms and learn all that I can. Since I already have two autoimmune diseases, I already deal with extreme fatigue and a whole host of odd symptoms and it makes me wonder how many may have been mg but I was attributing them elsewhere. I have also been haveing problems with shortness of breath off and on for the last year, and my pcp had dx me with adult onset asthma, although I never have any wheezing, just short of breath and feel like I cant get a deep breath. I also sometimes have problems getting a breath in the middle of the night when i am laying down. My EMG appt. is not until May, so feeling a little worried. Any words of advice would be appreciated. Thanks.

I'm sorry you have so much going on.

I'm not sure if a TNF blocker would affect the AChR antibody blood tests or not. Did they do the MuSK antibody test?

A primary care physician is not qualified to diagnose asthma, which, as you said, was probably a misdiagnosis. You should really go see a pulomonologist and have extensive breathing tests to determine what is causing your shortness of breath.

A pulmonologist can do regular PFTs, plus Maximum Inspiratory Pressure (MIP) and Maxiumum Expiratory Pressure (MEP). They can look for trends in the readings, as well. When someone with MG is doing poorly, the numbers tend to decrease with each try.

Those tests show how well you're doing at breathing air in and out. They can show neuromuscular fatigability.

If you have trouble breathing in or out, are generally weak, or can't swallow, then dial 911. It doesn't matter if you don't have a diagnosis yet.

A pull monologist can also check your O2 while sitting and then while walking around. At least the good ones do that! If you aren't doing well at breathing, they can also run an arterial blood gas (ABG) to see if there are any chemical changes (i.e., high carbon dioxide) going on in your body.

What your PCP can do is to check for basic things like a B12 or D deficiency, which are very common. They might not be causing the main symptoms, but they could contribute to them if you're deficient.

In case you do have MG, try not to overdo things. Extremes of heat and cold can make MG worse. A lack of sleep and so many other things that put stress on the immune system can, too.

Tilt your chin downwards if you have trouble swallowing. Also, you could try to sip some cool water between bites to see if that helps. Or eat softer food, etc.

Take some photographs of your face in the morning (if you're better then) and when you are worse. Try to do them in the same location, same head tilt and lighting. It's best not to use a flash. It's anecdotal evidence, but healthy people don't have their entire faces droop!!

As far as sleeping goes, try to sleep on your sides. Also propping yourself up with a couple of pillows under your head and one behind your back might help. Also, speak to the pulmonologist about an overnight oximetry and/or a sleep study to assess you for apnea.

What else can we do for you?

Sometimes it takes a few doctors to figure this all out. Hang in there and get some more help!

Annie

Thank you so much for responding to me. I don't think they did the MUSk, just the basic panel. I have taken a few pictures, as I have noticed lately that I have a very slight droop to my left eyelid in the evening when I am tired. I have had a sleep study and have sleep apnea and use a cpap. The breathing problems I have at night always happen in the middle of the night. usually, I will awaken to go to the restroom and when I lay down to go back to sleep, I cant breathe. I have to breathe very shallow and fast to get any air. This usually lasts a few minutes and then will ease. It also is worse on my left side, but happens also on the right. Primary care thought this was asthma, but I know I probably need to see pulmonology. I have just been so overwhelmed with doctors and medical stuff lately, I haven't wanted to add one more to the mix. Some of my symptoms, like the swallowing and eye droop and slurring my words are only happening when I am very tired and are so mild, I am sometimes wondering if I am making something out of nothing, but I also don't want to ignore symptoms. Do symptoms show up as that mild and transient in the beginning? I am no stranger to dealing with a new chronic disease, as I already have two, and I think this makes me even more prone to second guessing myself. Thanks in advance for your help.