Quote:
Originally Posted by AnnieB3
Yes, Tracy, you are going downhill. You need to see your neuro right away. You mentioned in the other post about a "tight chest" and that's a warning sign of worsening too.
Do you have a pulmonologist who can assess your breathing?
The amount of acetylcholine (ACh) in the body is reduced by an enzyme called acetylcholinesterase (AChE). Mestinon helps inhibit that enzyme so that we can keep our ACh in our neuromuscular junction longer.
Heat and cold increase AChE and, therefore, decrease the available ACh. Everyone is different but heat and cold affect MG and can make you weaker.
I don't like how you're describing your chest wall muscles (in the other post). If you can't breathe well, you have to go in to urgent care, the ER or your doctor. If it's really bad, where you can't take a breath in or out well, you need to go to the ER.
I hope you can get some better treatments to help you feel better. Take it easy.
Annie
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I agree with Annie. Worsening of MG can be quite subtle and you gradually seem to get used to it, until you have reached a level for which you can no longer compensate.
I think a good way of thinking about compromise in MG, is like a spring-you can pull it hard and it will go back to its original form, and then you can do it again, giving the illusion that it can withstand any pressure, until eventually it will not go back and you would have to fix it.
I believe this may also be one of the reasons that neurologists are so lay-back with regards to respiratory compromise. As many times real respiratory compromise will get better on its own with proper medications and rest.
this does not mean that it is not potentially dangerous and may be the final pull of the spring if you are not careful.
My neurologist's approach is to treat every exacerbation seriously, starting with more rest, then gentle change in medications and taking care of any possible triggers (electrolyte imbalance, infection etc.). Using non-invasive respiratory support as required. This makes the "pull on the spring" much milder and ensures that it will eventually return to its normal configuration, even if it may take a while. I believe it significantly decreases the risk of things getting out of control.