Originally Posted by seishin

So I saw the much anticipated MG-expert neuro that local MG'ers have raved about. In my opinion, the guy wasn't the expert I'd been led to believe (although he sees 50-60 MG patients). He told me point-blank MG doesn't cause urinary incontinence, never has pain associated, said that everybody responds to Tensilon (himself & my friend included),... I didn't dare object since I'd be provoking the bear. He wasn't interested in dialogue, cutting me off & demanding brief 'yes' 'no' responses. He laughed at me when I said I've had symptoms periodically since I was a kid, saying, "You have not had MG all your life!" The guy was a jackbutt.

He didn't do an extended muscle fatigability test either. His version lasted under 5 minutes & included checking arm & neck strength, following his finger, rocking once forward then back on toes/heels,... He did sustain the counter pressure for longer than I've experienced with other doctors, and he was much more demanding that I apply every ounce of strength. As a result, I didn't experience the 30-minute delayed 'blue ball muscle fatigability' I've described in another thread. In fact,.. I seemed to gain some of my strength, and even my breathing got easier. This I was not expecting... it didn't last too too long, I'm back on oxygen tonight.

I'm now suspecting that this could be Lambert-Eaton Myasthenic Syndrome (LEMS) rather than MG (keeping in mind I respond to both Mestinon & Tensilon). Also associated with LEMS is postural hypotension which would explain the wide range of blood pressure readings in a short time period (142/99 to 103/31) and corresponding breathing difficulties (especially lying down -- feels like I'm being strangled).

A doctor at the hospital the other day already ran the LEMS-associated VGCC antibody test so I'm waiting on the results. Also, the autoimmune variation of LEMS is associated with the same HLA subtype (HLA-DR3-B8) connected to Autoimmune Polyglandular Syndrome (which I have).

Today's neuro is having me come back Feb 18 for a repetitive stimulation test. Hopefully, that will indicate if this is LEMS. In the meantime, I'll keep my theories away from the doctor's ears since he appears openly hostile to my input. Whatever happens, this guy won't be my permanent neuro. I don't feel the need to pay money for abuse.

In the meantime, I'm terrified of an approaching weakness backlash from having strained so hard today. Breathing is already so compromised and I have felt the depths of the depths of the depths of muscle weakness to the point of near paralysis (moved one finger on keyboard to communicate). I've got a pulmo appt on Thursday so maybe they can get me more answers & help.