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Old 05-19-2013, 04:38 PM #1
mimc mimc is offline
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Default mestinon for pn?

I was wondering if anyone takes mestinon to combat fatigue from peripheral neuropathy. My neurologist prescribed it for me and it has really helped me enormously. I haven't heard of anyone who takes mestinon for anything besides myasthenia gravis. Now I am wondering if I have that too.
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Old 05-21-2013, 01:06 AM #2
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Hi, mimc. Come on over to the MG forum and we can help you out, okay?

Mestinon is not normally used for fatigue! It increases the amount of acetylcholine (ACh) getting to the muscles by blocking the enzyme acetylcholinesterase (AChE). AChE's job is to mop up ACh after it's done with its job of making muscles strong.

Was the doctor who prescribed it a neurologist? If so, OMG!

When muscles are weak, doctors say that they're "fatigued." So, in that case, fatigue does not mean sleepy tired but weak. Does your doctor think you have weak muscles? If so, then s/he should've figured out the cause of it before throwing a drug at your symptoms. And it's not the right drug either!

Provigil is often given for being tired for diseases like lupus.

Have you had your B12 or thyroid checked? Do you know the cause of your PN?

If I - or we on the MG forum - can help in any way, please holler!


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Old 05-21-2013, 01:21 PM #3
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It was my neuromuscular specialist that ordered it. I was surprised at well it has worked. I am frustrated because when i call the doctor I only get to talk to a resident and not the head doctor who gave me the mestinon. One resident said I might have mg and the nest time I called a different resident said no It is just for the neuropathy.I have Graves disease and had my thyroid irradiated three years ago. I get my thyroid levels checked every four months. My b12 I also get checked 2-3 Times a year. I definitely want to stay on the mestinon since it has been a miracle drug
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Old 05-21-2013, 02:59 PM #4
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I will be considered for treatment with Mestinon for my autonomic neuropathy. I see a new neurologist/autonomic specialist on the 28th.

Yes, it is primarily for MG, but Mayo Clinic has found it to be helpful with severe autonomic neuropathy to improve BP and other autonomic functions. I will try it if they feel I'm a good candidate. I have tried everything else from supplements to regular medicine. My autonomic neuropathy is from Sjogren's which has damaged the ganglia. This damage is permanent, so it's a matter of finding treatments to improve symptoms...and Mestinon seems to hold a little promise. We'll see.
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Old 05-21-2013, 04:00 PM #5
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Finding a doctor that can help with fatigue by using supplements and diet helps. Meds would be a last resort for me.
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Old 05-21-2013, 07:59 PM #6
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I guess I should say the mestinon is to give me energy from muscle fatigue/weakness. I started off telling doctors I felt weak and they said I was incorrect and that I had muscle fatigue. So I am confused as to which one is correct. I was running out of energy very quickly and spending from 4pm onward like a blob on the couch. Now i am able to exercise without having to rest every five minutes. There is definitely something wrong with my nerves somewhere for the mestinon to be working. Otherwise the mestinon makes normal people weaker. It is not just a matter of eating right.
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Old 05-26-2013, 01:04 PM #7
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I take mestinon (i believe the generic is pyridogistimine...which is what i take) for BP and to control heart rate. Before I started I would have instances where my heart would just spike to well above 100 BPM while sitting and havent had nearly as many problems since.
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