It sort of bothers me at times that when it comes down to it, I am not 100% sure what I really have. It almost bothers me more that I was the one to come up with the original diagnosis from the internet. I guess what I am concerned about is that once the doctors had the idea of what I thought I had, that they just went along with that because the symptoms I suggested I had seemed to fit those of NA. Sure, since that point, a couple of different doctors have agreed with that assessment, but what if they are wrong? What if I left out an important symptom early on because it had not happened yet? Now that it has happened, what if they ignored it because it was a new symptom that did not fit the set diagnosis?
One thing that bothers me is the tremors and muscle twitches I seem to still have. I do not see much mention of this in any of the symptoms lists for NA or HNA. I can see how the tremors would happen due to muscle fatigue of impacted limbs, but why if this is such an obvious thing with me is it talked about so little (if at all) in any of the web pages? My recent visit with the neurologist got me wondering about the little tics and twitches I have had since this started. It used to be that I would notice my foot twitch or a hand as I was resting. Or maybe I would kick my lower leg out as if some invisible doctor was testing my reflexes by tapping below my kneecap. But more recently, I have noticed individual fingers twitching. This morning before I got out of bed, I noticed my little finger, middle finger and thumb of my left hand twitch numerous times over a period of a half hour or so. I have to wonder if anyone else has these sorts of things happening to them. Leave a comment if you like. Thanks.
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I understand what you have been going through. My husband has Parsonage Turner Syndrome and, like you, I diagnosed it from internet research. Not one doctor (and there have been many) had any idea what was happening. My husband has had numerous surgeries to correct issues in his spine. He lost the cushioning between three separate vertebrae in his neck. Surgery put supports in. Then the same problem happened further down his spine. There were approximately 3 more surgeries to correct issues in his spine. While this was going on, and this happened almost immediately after the onset of the brachial plexus pain, he lost almost all the muscle mass in the right deltoid. He still cannot raise his hand above his waist. Then 3 years ago his hands started to lose muscle mass and became very thin. Then his fingers started to curl inwards. They are still that way and this will be permanent. In the last few months he now losing the muscle mass in his left deltoid with the same results as the right. His first neurosurgeon was stumped as it almost presents as MS but the symptoms did not quite fit. Like you I went in search on the internet and found the answer. I don't fault the doctor's as this is a rare disease. Now the past 10 days he has been having severe leg tremors so bad he almost fell. He can hardly sleep. Have you found any research that indicates leg tremors could be part of this disease?
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