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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | |||
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Junior Member
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AnnieB3 said in the thread on MG and Depression "I'm typing this and my arms are weak. That's one of my signs that I'm doing worse than usual."
Personally, my upper arms have changed drastically this past month. They're sore, they sting, at night it's difficult finding a comfortable position for them, my right upper arm is particularly weak, I have difficulty pulling my pants up. I've been on Gabapentin for the last couple of months - a prescription med for pain from damaged nerves (postherpatic pain) from an episode of singles which came on last October. I'm wondering if the arm weakness and pain and limitation is the drug or if it's the Myasthenia. I've been in MG remission for the past year - thank god - but my arm situation is scary. Any thoughts and suggestions would be most welcomed. ![]() |
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#2 | ||
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Grand Magnate
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Um, you do know that Neurontin can make MG worse, right?
If you combine the treatment for shingles with methylcobalamin B12, it will lessen the pain considerably. I hardly had tingling with my Shingles. If you are still having pain from Shingles, then you might have nerve damage. Pain killers will help get rid of the pain, but they won't treat the underlying issue (damaged nerves). B12 will. And Tylenol/acetaminophen is just as useful and won't harm your MG! Just my thoughts. Annie |
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#3 | |||
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Junior Member
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Annie • thanks so much for your thoughts.
No, I didn't know that Neurontin could make the MG worse. Apparently, neither did my GP, who prescribed the Gabapentin, and, I must say, knows very little about MG. My neurologist, whom I saw in November and who should know better, didn't tell me to stop the Gaba. So, I'm sorta at the mercy of ill-informed docs. Surprise !!! I definitely have nerve damage. The shingles onset was in early October - 3 ½ months ago - and the nerve pain is still significant, altho now it's more localized, whereas before it was girdling my back, sides and under breast, right side. So the pain is diminishing as far as area, but what's there is pretty bad. Plus the arm weakness, etc. I feel like a mess sometimes. It's challenging, to say the least, trying to put pieces of the health puzzle in place. Thank god for this Forum and knowledgeable and experienced member such as yourself. I am taking 1 mg B12 methylcobalamin - as well as other supplements - and have been for a long time. |
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"Thanks for this!" says: | AnnieB3 (01-27-2016) |
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#4 | ||
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Grand Magnate
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You might need a second round of Aclyclovir. Have you seen an internist or primary doctor since getting Shingles? It sounds like it's still active.
What MG drugs are you on? Are you immunosuppressed? I took a LOT of B12 during Shingles. 8 tablets per day (5000 mcg./total of 40 grams), spread throughout the day. There are many studies about using high dose B12 (not the regular dose) while healing nerves. Japan has done a lot of studies on it. Don't blame the doctors. If they didn't graduate in the past ten or so years, they might not have done the research to know about this drug. I'll bet the pharmacist knows. Someone needs to decide what is worse or if there is another drug you can use for pain (one that doesn't make MG worse!). Show your doctors these. http://www.ncbi.nlm.nih.gov/pubmed/12855353 http://www.ncbi.nlm.nih.gov/pubmed/10918256 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3539726/ There used to be more studies on PubMed, but I swear that the drug companies have forced them down. Granted, some people can handle the drug. However, if you started having more MG symptoms after you started it, you might be one of the ones that shouldn't push that envelope. Also, the Shingles might have damaged the nerves in your arm. I suggest talking to Mrs. D (PM her) to see if she has any other suggestions for you. I really hope you heal up soon! It's an awful thing to go through. Annie |
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"Thanks for this!" says: | juliejayne (01-28-2016) |
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#5 | |||
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Junior Member
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Thanks again, Annie. I'll address your fine points a bit later as I'm pressed for time at the moment. You suggested talking with a Mrs. D ... I don't know who she is or how to reach her. Can you help there?
Much obliged. |
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#6 | ||
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Grand Magnate
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She's one of the Mods. Just click on her name at the bottom of the main MG page on the right.
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#7 | ||
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New Member
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