01-22-2018, 01:45 AM
(01-21-2018, 11:36 AM)Justice1 Wrote: Your so right about it taking so very long..I find care is so fragmented.I have the twitches to various body parts,upper and lower,trunk and extremeties,and it's not anything bad so far..I think underlying cause can be so broad,,like electrolyte imbalance,hormones,some illnesses of course,and can just be normal.The odds are that its just normal body stuff but since she is so worried has she had any tests done to see what underlying thing it maybee.Ive found my diagnosis,and it sucks,,it's a systemic vein failure,,and also narcolepsy,,I'm a bit shocked and processing it all..preceded by 5 yrs of hypertension,I've had a gazillion tests and nothing is happening that could be causing unusual twitches..
Wow, I hadn't realized that you had been through all that, but I fully relate. Took me 2 years to get my MND dx and about every test under the sun. Mine was so blatantly MND, but docs hate to have to break that news to anyone. My doctor himself told me that doctors feel that way. Like you said, there are so many underlying issues that can cause similar symptoms. I once saw a list online that had over 200 causes of benign fasciculation's. The thing is that when you add is atrophy of the muscles, progressive weakness, etc, it narrows things down to the point that you know you are in trouble. BTW, my wife doesn't have any of those things, so will keep on praying for the best. She does have a positive EMG and some denervation, but they are writing that off to other factors. She continues to go for one test after another. Interesting that you should mention narcolepsy. I have had that since childhood and they seem to just be making the connection between people with that and other disorders. In fact, there is a study online that says that 80% of those suffering from narcolepsy with eventually develop a neuromuscular disorder (not necessarily a deadly one, though). Has to do with displaced proteins in the brain that are causing the narcolepsy. So, what are they going to do for your systemic vein failure, if I may ask? Is it treatable? Doesn't it suck to chase down a dx and then find out that it is not a good one? Please let me know how you are doing and how they are treating you. Thanks, RM
