Thank you for the update, pat! I've been thinking about you. If you need me I'm always here. :)

Thanks so much, Erica! That means a lot to me. I'd like to be there for you as well! You're in my thoughts and prayers.

Pat, great question and I like you am just on mestinon. I think it is not so clear cut. Both my daughter and I have every symptom of MG but both of us are negative to testing both to AChR and for me I have had one jitter test that was negative. That said we both have responded positively to pyridostigmine and me dramatically so. It was like someone switched on a light switch and suddenly I could hold my arms up and drive and do better with walking and breathing. That said things are complicated with both of us having rather severe neuropathy and autonomic symptoms. I do have Raynauds and "Hashimotos as well.

Daughters double vision and ptosis is so bad even her prism lenses are beginning not to be enough. She can't swallow and has a GJ tube and gastroporesis has caused aspiration pneumonias and near death hospitilizations. Most of the time she is in her hospital bed or in an electric wheelchair as she is too weak at times tio turn the page of a book and she uses a keyboard to speak.

She is on prednisone for another reason and only started the pyridostigmine recently since it worked so dramatically well for me. it helps her too but she is on so many competing drugslike atropine I fear she is not taking anywhere near enough.

I have been in a desperate search for what is wrong with me so I can help her. At least she is on the pyridostigmine now. I just started mine in August for a different reason. Both my neruo and I were astonished when my increasing muscle weakness was dramatically helped by it.

I have done well on mestinon but now have other things happening but no one knows if the increased problems with motility and swallowing are the neuropathy or the muscle weakness. Then there is that hypertrophy and myotomy which makes me wonder about other dystrophies. I am now facing maybe an interstim implant for helping elimination and daughter already has one. Both of us are on BIPAP and they just added a back of rate of 12 to mine as I am not initiating breathing as often now as I did. I have had two breathing problems while in the hospital this past year from. competing meds that caused my work of breathing to dramaticalloy increase.

Neither my daughter who is so ill or myself have a working diagnoses other then muscle weakness and suspected neural junction disorder. MG is not the only disease that looks like this and while I have other autoimmune diseases daughter does not sem to or it has not showed up yet on testing.

I just started low temporary dose of prednisone to allow me to visit her as she has a cat and I am very allergic. I get a bad headache with prednisone and increased BP and nausea. I already have labile BP due to orthostatic hypotension and I don't think I could live on this stuff. I also have nor epi surges that I think are effected by cortisone and prednisone as they increase the vasculatures response to nor epi;

I am in that gray area where I for sure have something going on that seriously looks like neural junction disorder and have a huge positive response to pyridostigmine but without that diagnoses no one is going to throw all these other meds at either my daughter or myself.

I wish there was someway to get a clearer idea of what is going on here. I just went to my neurologist and he repeated the autonomic testing and also antibody testing. Neither are back as yet but I
am not holding my breathe thinking there will be an epiphany.

pat,
As with everything MG, this is all complicated. Yes the immune modulators and immunosuppressants make you more susceptible to illnesses, on the other hand inadequate treatment of MG often leads to poor clearing of the lungs and gastric reflux which can lead to aspiration pneumonia, etc. So symptoms can be very mixed. It might be a good idea to have a plan in place with your neurologist for worsening symptoms. Other than prednisone, the quick treatments are IVIG and PLEX. Both are temporary.

Some of us have had a diagnosis of asthma that was really MG and although that may not be your case, it is symptomatic of the difficulty of trying to tease out causes for respiratory problems. All my nighttime coughing and SOB resolves when my MG is better. b.

GreenMarie, I am so sorry for what you and your daughter are going through! My neurologist proposed a trial of mestinon even before he sent me for RNS and tensilon testing with another neurologist who does more of that sort of thing. I'm thankful that I got a diagnosis based on both the RNS and tensilon tests even though I am seronegative. And, I am thankful that Mestinon keeps me functional--maybe not 100%, but good enough to do what I need to do. I pray that your recent round of testing gives your neurologist some answers rather than more questions!

bweeds, I really appreciate your insights. I do have some concerns about having an increase in reflux and having a few episodes of "choking on my own spit" and whether either played a role in the bout of pneumonia that I am recovering from. And I do have these seemingly random episodes of feeling short of breath that have me reaching for my albuterol inhaler. My pulmonologist said that my spirometry indicates asthma rather than an MG breathing problem, but he also said that there are breathing tests that they have to do at the hospital that are better indicators for MG breathing issues. He doesn't want to do any of those until I recover from the pneumonia. I appreciate your advice about talking to my neurologist about a treatment plan. I plan to do that but will probably wait until my November appointment in hopes that getting completely over the pneumonia will improve my MG symptoms (which I realize might just be wishful thinking)... If my symptoms worsen from where they are now, though, I'll call sooner.