NeuroTalk Support Groups - Multiple antibodies

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- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Multiple antibodies (https://www.neurotalk.org/myasthenia-gravis/182820-multiple-antibodies.html)

Quote:

Originally Posted by AnnieB3 (Post 950235)

Quandry, The immune system is complex and they still don't know everything about what treatments are best for exactly what kind of disease. Like Alice said, some treatments do work for some diseases or people but don't for others.

I think the important thing is to try to work with your neurologist to see what works best for you. Have you discussed IVIG?

Alice, I did a lot of research on this early on. Any of the IgG subclasses can be involved in MG. And I believe that is why some people might have a more mild course of the disease as opposed to others. I don't want to get into a long discussion here, for the sake of Quandry, but I had to bring this up.

http://www.ncbi.nlm.nih.gov/pubmed/3621677

http://brain.oxfordjournals.org/cont...ws025.abstract

https://openaccess.leidenuniv.nl/handle/1887/20412

http://books.google.com/books?id=V61...20IgG3&f=false

Annie,

Surprisingly, the role of IgG4 subclass antibodies has not been appreciated enough for many years, as they do not fix complement and do not lead to destruction. The understanding that antibodies can exert their effect by internalization and blocking of essential cellular pathways is relatively recent.

Even more so the understanding that this can lead to a much more severe (and not milder) course of the disease.

Quote:

Originally Posted by alice md (Post 950383)

If I understand correctly you are looking for better symptomatic care.

You should consider (if there is no contraindications) discussing with your physicians the possibility of ventolin or ephedrine. You may also consider trying food supplements which can improve muscle energy production (such as those being used by athletes to improve their performance-coenzyme Q10, carnitine etc.).

The mistake ER made with me was to send me home with Albuterol twice when my neck was weak, I could barely walk, and when I couldn't breathe. I tried the Albuterol and it didn't help. I don't have asthma. When my breathing issue is a problem it feels as though all the muscle in my upper chest are smashing my diaphragm. My upper back muscles are so weak they just hang at times and my upper arms feel like dead meat. The Mestinon is working for my breathing but not for other muscles. I just had an xray of the lumbar with a few vertebrae into my thoracic area because the weight of my upper body has caused problems with my spine. I can't lift anything or else all the air is expelled as if I was punched in the stomach and afterwards I can't stand straight without lifting my upper body with my arms. My ribs feel like a lot of pressure is placed on them too. Sometimes it's hard to even hold my head up. I think if I could find something else to help the Mestinon my muscles might relieve the pressure on my diaphragm and spine. If I take any more Mestinon then my swallowing is an issue. Maybe I'll try taking a half pill more and see if it helps.

I don't hear people on here talking much about upper body weakness (especially in the upper back). I not only have the upper body weakness my thighs feel like lead weights.