I finally have a diagnosis!
- Thread starter flutterby
- Start date
flutterby
Fly away!
Thank you, ladies.
Myasthenia Gravis is an autoimmune neuromuscular disorder. It's hard to explain, so here is a link:
http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm
I have started treatment with a medication called Mestinon which is specifically for MG. I'm starting on a very low dose, 3 times a day. So far, the side effects are kind of yucky, but I'm hoping they'll go away with time. I was able to get a large mixing bowl off of the top shelf yesterday with one hand. That may not sound like much, but before this medication I couldn't get it down with both hands. I had to have someone else do it for me or I would drop it - besides it being painful to even attempt. Washing my hair was a struggle and caused so much weakness that I often needed to have someone else comb it out after, because I was unable.
I have so much hope now. I'm looking forward to not only being able to wash, dry, fold, and put away laundry all in the same day
, but to going back to work - full time. I'm getting ahead of myself, but I've not allowed myself to hope for a long time because it always ended up being such a disappointment. This time, I'm giving in to hope completely.
Myasthenia Gravis is an autoimmune neuromuscular disorder. It's hard to explain, so here is a link:
http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm
I have started treatment with a medication called Mestinon which is specifically for MG. I'm starting on a very low dose, 3 times a day. So far, the side effects are kind of yucky, but I'm hoping they'll go away with time. I was able to get a large mixing bowl off of the top shelf yesterday with one hand. That may not sound like much, but before this medication I couldn't get it down with both hands. I had to have someone else do it for me or I would drop it - besides it being painful to even attempt. Washing my hair was a struggle and caused so much weakness that I often needed to have someone else comb it out after, because I was unable.
I have so much hope now. I'm looking forward to not only being able to wash, dry, fold, and put away laundry all in the same day
, but to going back to work - full time. I'm getting ahead of myself, but I've not allowed myself to hope for a long time because it always ended up being such a disappointment. This time, I'm giving in to hope completely. barneysmom
Member
Good to hear your recovery is beginning. I love recovery. It's such an awesome process. Do you keep a journal? If not, consider buying a pretty one so you'll remember the journey.
Marguerite
Active Member
mother in law takes Mestinon. After so many years her dose is quite high, but it still works for her.
If you're having side effects, your dose may be stronger than you need. It will take time to get it right. Over time, your need will increase as your body destroys more acetylcholine receptors. This is normal but generally happens very slowly, and a medication increase handles it. The first main problem you will be having, will be your heart reacting. The vagus nerve innervates the heart, and the Mestinon stimulates the vagus nerve, slows the heart rate. Feels odd. You may also have become adjusted to accepting a slightly faster, weaker heart rate as normal.
It will settle, but mostly it's medication tweaking. List what you observe and talk it over with the doctor.
Marg
If you're having side effects, your dose may be stronger than you need. It will take time to get it right. Over time, your need will increase as your body destroys more acetylcholine receptors. This is normal but generally happens very slowly, and a medication increase handles it. The first main problem you will be having, will be your heart reacting. The vagus nerve innervates the heart, and the Mestinon stimulates the vagus nerve, slows the heart rate. Feels odd. You may also have become adjusted to accepting a slightly faster, weaker heart rate as normal.
It will settle, but mostly it's medication tweaking. List what you observe and talk it over with the doctor.
Marg
flutterby
Fly away!
It was funny. My doctor told me I should be able to see results within 30 minutes of taking the medication. So, I waited 30 minutes and thought, "Well, I don't feel any different." 
Like I was all of a sudden going to be wonder woman or something. I realized I had to actually *do* something and see if I could, you know, do it. And I could.
It has decreased my heart rate, but my doctor didn't take me off my beta blocker which is contraindicated. It caused a lot of nausea and GI disturbances. But, the biggest problem is that it makes me want to stretch excessively and extend all of my joints until they are locked - and that feeling progresses to everything touching me bothers me and I become very agitated and irritable.
The scary thing is, with Mestinon the symptoms of underdose are the same as overdose. I certainly don't think it was an overdose - I'm on the lowest starting dose from what I can tell: 60mg every 8 hours.
I understand it takes a lot of trial and error to get the dosage correct. I also need to talk to my doctor about checking my thymus gland, and about other medications that are used to suppress the immune system, i.e., Imuran and cyclosporine. I don't know when they are used - if they are used in conjunction with Mestinon or as an alternative. Since Mestinon just replaces the acetylcholine receptors it doesn't appear that it does anything with the immune system. So, then I have a hard time understanding how it would help with my other symptoms, i.e., fevers, generalized fatigue, etc. There are also other treatments like plasmapharesis and another one that are used at certain times.
Like I was all of a sudden going to be wonder woman or something. I realized I had to actually *do* something and see if I could, you know, do it. And I could.It has decreased my heart rate, but my doctor didn't take me off my beta blocker which is contraindicated. It caused a lot of nausea and GI disturbances. But, the biggest problem is that it makes me want to stretch excessively and extend all of my joints until they are locked - and that feeling progresses to everything touching me bothers me and I become very agitated and irritable.
The scary thing is, with Mestinon the symptoms of underdose are the same as overdose. I certainly don't think it was an overdose - I'm on the lowest starting dose from what I can tell: 60mg every 8 hours.
I understand it takes a lot of trial and error to get the dosage correct. I also need to talk to my doctor about checking my thymus gland, and about other medications that are used to suppress the immune system, i.e., Imuran and cyclosporine. I don't know when they are used - if they are used in conjunction with Mestinon or as an alternative. Since Mestinon just replaces the acetylcholine receptors it doesn't appear that it does anything with the immune system. So, then I have a hard time understanding how it would help with my other symptoms, i.e., fevers, generalized fatigue, etc. There are also other treatments like plasmapharesis and another one that are used at certain times.
nvts
Active Member
Woohoo! Fantastic Miss Flutterby! Now...when are we going to all descend on the idiots that systematically told you "it's in your head" or accused you of drug seeking? You'll be feeling better fairly quickly, so we need to all head out there, show them your update and slap 'em silly! There are more of a few of us who've been stewing over this with you for a long time!
Finally for you! I'm so glad that you've finally gotten some closure on this whole subject!
Beth
Finally for you! I'm so glad that you've finally gotten some closure on this whole subject!
Beth
Marguerite
Active Member
Heather, if the fatigue has ANY component caused by nerves trying hard to get the message to the muscles, and muscles doing their utmost with what little nerve impulse they can get, then Mestinon WILL make a difference. But it won't be known how much, until you try it and work out how much is due to what.
Mestinon doesn't work by replacing the acetylcholine. It is a little more complicated than that. It works by stimulating the nerve terminals to produce more acetylcholine than they otherwise would, which should put things back to what it would be like if you did not have MG.
At a normal nerve terminal, the nerve signal races along, gets to the end and there is a gap - the synapse. To bridge the synapse the nerve terminal secretes acetylcholine. This bonds to acetylcholine receptors on the other side (could be another nerve or it could be a muscle fibre). Then the bonded receptors send the message along the next part of the trip, to eventually reach the destination.
In MG, there are antibodies slowly destroying the acetylchioline receptors. Fewer receptors mean the same amount of acetylcholine results in a weaker response. INI other words, you tell your body to lift that 10 Kg weight and your body responds with barely enough force to pull the skin off a rice pudding. The further the nerve signal has to travel (depending on whether the problem is systemic, or restricted to some parts of the body such as the eyes) then the more cumulative will be the perceived weakness, which some people also perceive as fatigue.
Once the acetylcholine has done its job bridging the gap, it gets broken down by the body and the components get resorbed back into the nerve terminal (via Ca++ channels) and recycled.
So numerous things can go wrong:
1) the receptors get destroyed (as in MG)
2) There can be problems with the Ca++ channels in the nerve terminal, so the nerve isn't able to release enough acetylcholine. If this were the problem there would be other, more widespread problems too, of the really weird variety (including some weird muscle spasms).
3) Other problems in reverse - the acetylcholine not getting broken down soon enough, so there is residual neurotransmitter re-triggering the nerve impulse. A lot of insect sprays work this way which is why flies die in convulsions. Also tell your kids that this is the mechanism that LSD uses - it blocks the breakdown of neurotransmitter in the brain, so what it does to your brain is what insect spray does to flies' muscles.
So to treat MG, they need to find a way to overcome the problems of increasing breakdown in neurotransmission.
Since MG is autoimmune in origin, chances are you have other autoimmune health issues. Treating one can help in other areas too, although treatment for MG with Mestinon is highly specific.
I realise, Heather, I'm probably not telling you anything you didn't know. But sometimes going over what you do know, can help you think of something you may have overlooked.
I do know that when mother in law's Mestinon isn't on board or she's late taking it, she does get a lot more fatigued. Your body has to work a lot harder to produce the same result, and that is tiring.
It will settle, as you adapt and the dosage gets stabilised.
Marg
Mestinon doesn't work by replacing the acetylcholine. It is a little more complicated than that. It works by stimulating the nerve terminals to produce more acetylcholine than they otherwise would, which should put things back to what it would be like if you did not have MG.
At a normal nerve terminal, the nerve signal races along, gets to the end and there is a gap - the synapse. To bridge the synapse the nerve terminal secretes acetylcholine. This bonds to acetylcholine receptors on the other side (could be another nerve or it could be a muscle fibre). Then the bonded receptors send the message along the next part of the trip, to eventually reach the destination.
In MG, there are antibodies slowly destroying the acetylchioline receptors. Fewer receptors mean the same amount of acetylcholine results in a weaker response. INI other words, you tell your body to lift that 10 Kg weight and your body responds with barely enough force to pull the skin off a rice pudding. The further the nerve signal has to travel (depending on whether the problem is systemic, or restricted to some parts of the body such as the eyes) then the more cumulative will be the perceived weakness, which some people also perceive as fatigue.
Once the acetylcholine has done its job bridging the gap, it gets broken down by the body and the components get resorbed back into the nerve terminal (via Ca++ channels) and recycled.
So numerous things can go wrong:
1) the receptors get destroyed (as in MG)
2) There can be problems with the Ca++ channels in the nerve terminal, so the nerve isn't able to release enough acetylcholine. If this were the problem there would be other, more widespread problems too, of the really weird variety (including some weird muscle spasms).
3) Other problems in reverse - the acetylcholine not getting broken down soon enough, so there is residual neurotransmitter re-triggering the nerve impulse. A lot of insect sprays work this way which is why flies die in convulsions. Also tell your kids that this is the mechanism that LSD uses - it blocks the breakdown of neurotransmitter in the brain, so what it does to your brain is what insect spray does to flies' muscles.
So to treat MG, they need to find a way to overcome the problems of increasing breakdown in neurotransmission.
Since MG is autoimmune in origin, chances are you have other autoimmune health issues. Treating one can help in other areas too, although treatment for MG with Mestinon is highly specific.
I realise, Heather, I'm probably not telling you anything you didn't know. But sometimes going over what you do know, can help you think of something you may have overlooked.
I do know that when mother in law's Mestinon isn't on board or she's late taking it, she does get a lot more fatigued. Your body has to work a lot harder to produce the same result, and that is tiring.
It will settle, as you adapt and the dosage gets stabilised.
Marg
