If there was too much B6 in your body, that
might have caused the neuropathy.
Mestinon makes breathing better in MG due to giving Acetylcholine more time to stick around in the neuromuscular junction. So it does make breathing better in that respect.
What I'm talking about are the muscarinic effects of Mestinon. The drug can cause increased bronchial secretions. There are more articles in PubMed on this topic (search "acetylcholine asthma" or "Mestinon asthma"). See the PDF below.
So you don't take anything but a rescue inhaler for asthma? Really? Do you have ongoing asthma or sporadic due to seasonal allergies? Watch for an increase in symptoms while on Mestinon. You might not have any issues with Mestinon in that respect! I already had bronchial hypersensitivity before taking Mestinon.
B12 patches won't help as well with pernicious anemia or if your family has the MTHFR mutation. Only methylcobalamin B12 via the bloodstream (some through GI tract) will help. Sorry that runs in your family. What runs in mine is achlorhydria (lack of stomach acid). If someone can't digest food well, nutrients can't be absorbed by the small intestine well.
Has anyone tested your methylmalonic acid or homocysteine? Those will be elevated if B12 isn't making its way to the tissues. I hope you're taking methyl-B12 and not cyano-B12.
That drive might be worth it, if someone else can take you! Just one appt. with Dr. Weiss in invaluable. He can recommend treatments, etc. Dr Howard is at UNC.
Info on Gabapentin/Neurontin. The first one is from 2017.
Review about gabapentin misuse, interactions, contraindications and side effects. - PubMed - NCBI
Gabapentin-induced exacerbation of myasthenia gravis
Gabapentin may be hazardous in myasthenia gravis. - PubMed - NCBI
The drug companies really don't like anyone saying that people can't take their drugs! Ketek/Telithromycin is another "do not take" drug for MG. Quinolones now have a black box warning to that effect, even though there are some people who can handle them.
Do you drink caffeine? Caffeine does the same thing as Mestinon. They block Acetylcholinesterase (AChE) so that we can use acetylcholine longer. That enzymes "mops us" Acetylcholine (ACh) when it is done with its job of making our muscles strong. Too much caffeine + Mestinon might cause overdose symptoms (again, see PDF).
Some drugs can increase Acetylcholinesterase (enzyme).
If you ever have questions about how a drug effects MG, other than the many sites out there that list contraindicated drugs, do a search of "acetylcholine + the drug."
Is your brain exploding yet?
Thanks, Mike. I hope your sis is okay on that drug.
Annie