Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone -I just wanted to put something on here to see what others think, if anyone has tried this and maybe in case this may help anyone else, especially with ME, Fibromyalgia or Chronic Fatigue alongside their MG.
My brother has been on at me for months about this company which makes products for athletes and sports people to help with muscle recovery. One of their products is called Ribose - its a completely natural sugar and it is used to increase the body's cell ATP after it is depleted by intense exercise and is therefore a recovery product. (He did mention that the Ribose imported from the USA can have Chemicals in it for some reason so I thought I'd mention that as most of you are in the US and may need to be careful about that?) It is not absorbed into the bloodstream so doesn't affect blood sugar levels etc. By accident, the company have had major success with ME, Chronic Fatigue and Fibromyalgia patients and Doctors here in the UK are using and recommending it. I had a chat with them yesterday to see if it could help alleviate the fatigue element that the Mestinon seems to miss and they were very honest in saying they did not know but I figure there's no harm in trying it and this makes more sense than protein shakes/bars and overloading my system when I am unable to exercise so my body can metabolize/process it all! They said they would like to keep close contact and look at dosing etc (I am just to take a spoonful morning and mid-afternoon to start and go from there) and they have amazing stories about how much it has helped people with their cognitive/mental fatigue as well as physical - they actually offer people diagnosed with ME their money back if it doesn't help as they have had so much success!! I will say - we agreed that this is a gamble as MG's problem lies at the neuromuscular junction but worth a shot! He said if I don't notice any improvement within the first week this probably won't be helpful for me......so, I will let you know how I get on!! Fingers crossed hey?!
I hope you are all well and having a good day :)
Eve.x
My brother has been on at me for months about this company which makes products for athletes and sports people to help with muscle recovery. One of their products is called Ribose - its a completely natural sugar and it is used to increase the body's cell ATP after it is depleted by intense exercise and is therefore a recovery product. (He did mention that the Ribose imported from the USA can have Chemicals in it for some reason so I thought I'd mention that as most of you are in the US and may need to be careful about that?) It is not absorbed into the bloodstream so doesn't affect blood sugar levels etc. By accident, the company have had major success with ME, Chronic Fatigue and Fibromyalgia patients and Doctors here in the UK are using and recommending it. I had a chat with them yesterday to see if it could help alleviate the fatigue element that the Mestinon seems to miss and they were very honest in saying they did not know but I figure there's no harm in trying it and this makes more sense than protein shakes/bars and overloading my system when I am unable to exercise so my body can metabolize/process it all! They said they would like to keep close contact and look at dosing etc (I am just to take a spoonful morning and mid-afternoon to start and go from there) and they have amazing stories about how much it has helped people with their cognitive/mental fatigue as well as physical - they actually offer people diagnosed with ME their money back if it doesn't help as they have had so much success!! I will say - we agreed that this is a gamble as MG's problem lies at the neuromuscular junction but worth a shot! He said if I don't notice any improvement within the first week this probably won't be helpful for me......so, I will let you know how I get on!! Fingers crossed hey?!
I hope you are all well and having a good day :)
Eve.x
-sherry
Be well.
Al
Hi Al, do you find it helps with the fatigue element at all of your MG rather than the muscle weakness??
Eve.x
Hope you feel better.
Al
TERRY
I have since been drinking Vita Coconut water and I have to say that I have felt better over the weekend while drinking it - this could be pure coincidence and maybe I was due a few better days, but I'm going to stick with it for now and see if it continues to take the edge off the fatigue?
I hope you are all well and having better days too :) x
My goal now is to loose some weight. The overall tiredness is really putting a toll on my mind. My swimming helps so I am back at that....but this past month since I have had a busyier life with new grandkids...when I get home I am exausted forever. My adrenaline gives me what I need to care for them and have fun...but when I get home I am so exhausted.
I am seriously going to try really hard to loose weight. Carrying this extra weight cannot help.
I am glad you are trying everything :)
You say:.......
......this makes more sense than protein shakes/bars and overloading my system when I am unable to exercise so my body can metabolize/process it all!.......
For me, I started out with overwhelming chronic fatigue. Exercise was getting up from the bed in the morning. Whey protein, approx 10-20 minutes after ingestion would help me initiate muscle movements that I otherwise could not manage. My husband said I was a rag doll coming to life. The first time I tried it I was sitting on a park bench not so far from my car and the whey literally fed my muscles not for a work out, but to be able to walk some 100 meters to my car so I could drive home. I even considered calling a cab to drive me there! I dont believe I accumulated anything in my system. I believe that that was the actual work out for the day and that any normal amount was actually too shy of what my muscles actually needed to function any where near normally. And I tried everything I could lay my hands on. The only thing that worked at that time was whey protein and quite embarrassingly, very small amounts of champagne!!! (and only champagne no other alchohol)
A few years later though, whey protein did absolutely nothing once my fatigue had evolved into fatigable weakness with diurnal variations over 3 or so years, it was then that Mestinon was the only thing that could get the led out of my muscles and lifting that coffee cup up from the table.......
Glad to hear about coconut water.....Someone some day will stumble upon something - so why not you? :):):)
Calmday