Hi, I am not that clear how MUCH benefit IV IgG gave your mother. I understand that it helped her to be able to move. ALS is SUPPOSED to be only motor, so to have tingling in her hands is a little atypical. GBS is SUPPOSED to be symmetric–although lots of people on this site will tell you that their problems were not symmetric. One characteristic of ALS is that it is not symmetric. There is another disease in the the same group as GBS but more like CIDP called MMN–multifocal motor neuropathy with conduction block that is a peripheral disease but that acts very much like ALS–the textbooks say. MMN does respond to IV IgG. If indeed your mother responded to IV IgG, tell the neurologist this again in detail and ask that she get another dose of IV IgG to see if it will help. It should not help ALS, but it should help MMN. If it helps, she should get it AT LEAST every month–maybe more frequently. MMN is more likely to have sensory changes. It is more likely to have EMG/NCV tests like CIDP, but the most important point is that IV IgG may help her a lot.
WithHope for a cure of these diseases
The title of this was supposed to be MMN–but it got changed to Mmn. I did not mean mmmmm. I meant MMN.
In reading your story, I wondered about MMN, multifocal motor neuropathy which is a chronic immune mediated polyneuropathy, but one that classically affects the upper extremities more than the lower and usually is predominantly motor. You have very little sensory involvement, it seems, although you could have more than just the left foot neuropathic pain that you mention (or this could be really bad and you not saying that). This is also treated with IV IgG. Sometimes it helps to look for GM1 antibodies in MMN. I do not know details of MMN, but it might be worth asking your doctor about since the upper body is affected more than the lower.
A couple of questions/suggestions. Have you ever had an EMG of the arms? Often it is best to look at the places most affected by symptoms and I would wonder about your arms since there is so much fatigue there.
Is your GE reflux time course associated with the respiratory muscle weakness and have you had other “autonomic” changes such as slowing of internal organ function (constipation, trouble to empty the bladder) or alterations in blood pressure or heart rate.
There are a few case reports of cardiomyopathy and Guillain-Barre/inflammatory polyneuropathy. I read about this long ago and do not remember if there was an explanation as to why they might be associated, but you/your doctor could search for the combination on Google or PubMed to see if that gave any information that might help you.
My final comment, is that many of us on this site have had a long time from symptoms to diagnosis and some remain a mystery. If the suspicion is an immune mediated process, sometimes it is worth a trial of treatments for such (Iv IgG or steroids, for example). As well, almost everyone that comments here will attest to the fact that they are not like the textbooks. There is a lot of variation in what symptoms people have, severity, and course.
WithHope for cure of these diseases