Thanks for the summary Nicky. There were lots of sites and the amount of info was just overwhelming, but they kind of repeated after a while so gave up. Mine affects upper and lower neurons, find it hard to open bottles, been dropping things, whereas for the legs, i have this unstable walking gait as find it hard to control the way i walk. its like i sway from side to side.
Have been eating a lot, but my weight's still goin down. The fasciculations are driving me crazy today, it makes resting so difficult. May just take a video of them to post up. Lol.
Haha.. I ain't exactly fit or anything, had asthma as a child, had ovarian cysts which had to be operated on, but have been swimming and running to build myself up after the operation. This kinda led to me neglecting the earliest symptoms which appeared in my left hand. Thought I was just tired or clumsy. Some of the sites also mentioned cramps and pain, and I've been experiencing it for the past few weeks. The pain deep inside simply irks me, feel like pounding on the spot to make it go away.
Thansk so much for everything!
Quote:
Originally Posted by Nicknerd
Hi Connie,
There are four different types of Motor Neuron disease. Only voluntary muscles are affected.
The most common is ALS (amyotrophic lateral sclerosis). It affects both the lower and upper neurons. There are fasciculations, wasting (atrophy) and weakness of all muscles, except for the eyes.
Progressive bulbar palsy also involves both upper and lower neurons. Symptoms start in the facial muscles (slurring, swallowing difficulties, etc.). There are also fasciculations in the tongue and face.
Progressive muscular atrophy only affects the lower motor neurons. Weakness, 'clumsiness' (lack of dexterity) and atrophy occur.
Primary lateral sclerosis only affects the upper motor neurons. There's weakness in all muscles, but there is no atrophy.
I hope that helps a bit...I think that docs. feel that they have to say that the illness is fatal, but it really doesn't have to be. I can give you a website that's really excellent in terms of getting to know other people who are living with the illness. There's also a forum on this site, but that site's pretty awesome too...
One thing I'd recommend, and this will sound really weird, is a high/average-fat diet (or a traditional diet of eggs, milk, butter, things like that). Keep taking vitamins, but don't limit your intake of fat, even animal fat. There's a lot of research that shows that low cholesterol is bad for neurological disease. I think it's because you need adequate cholesterol for nerve-to-muscle communication. Apparently, having low cholesterol predisposes people to developing neurological diseases (including MG). Maintaining a high-fat diet increases lifespan for people with MND and other problems like Parkingson's disease.
It might also help you gain weight. I know that for a long time, I was limiting my intake of fat because I thought that my 'poor' diet was contributing to all of my health problems. When I started eating the way I used to again, I started gaining weight and feeling much better.
By the way, I'm no doc., so sorry if I'm jumping the gun here!  ....When I was concerned that I might have ALS, I did hours and hours of research on the net to see what I could do to help it. The high fat thing was one thing that really resonated with me, made sense on a lot of levels (apparently, many of the people who get MND are athletic or fit), so I was like, 'bring on the BLTs!' 
Good luck with everything and PM me if you want the website!  |