I, for at least one, am sensitive about anyone touching my affected right scapula. I am not sure why, or if this is common- but if anyone comes close to touching me, I want to punch them- Well, maybe that is extreme, but at least I want them to stop. It really does make me feel nervous.
Today I was at one of our local home improvement stores- just standing there, and suddenly, I felt something brush past me that bumped my right scapula. I had no idea it stuck out that far that this might be an issue. That is why I am considering getting a flashing light attached somehow. I am joking a bit. Come on everyone- It is called personal space. If you pass by someone close enough to bump their shoulder blade, you are too close. Of course, I guess mine must be an additional inch or two further out than anyone else. That is still too close. Maybe a red flag would do?
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oh my, i can relate to that in so many ways. son is going through the same with people who don't know him and aren't aware of his winged scapula. i even fired one of the first specialist to care for him concerning this manner b/c the way the dr. examined my son without any care or caution to the physical pain caused by exam that i witnessed. son was in distress, i was in distress. that was the end for that "expert on bracial plexus".
ReplyDeletecountless times, i have had to leave shopping buggies in the lane and get out of the store b/c of someone bumping into me and exaserbating pain level. i have had to rely on others at times to do shopping and such. just sitting some place waiting for an appt. has been unbearable at times.
i have found that many people just don't get the kind of pain this disorder causes. it is frustrating at best. i would not want anyone to suffer with attacks of this nature, but i sure would like just a little understanding from people.
Hello Tina
ReplyDeleteI do not think the condition is common enough for any real experts to just luckily be found at random. When I talked to my doctor a while ago before he told me he could not talk about this- he said that he had never heard of NA?HNA. I gave him a couple of web site print outs. But, it made me wonder if continuing with him would be worthwhile. I am not sure. Cases are so rare that the average doctor may not ever see it in his own practice even if he does know about it. Even if they take the time to realize they are seeing something they have not seen before, they may jump to the wrong diagnosis anyway. I guess it is just something we have to be aware of for ourselves and family members who may have it too. Maybe it is time to say, ‘Look doctor. I realize you may not have ever seen this, but here it is. I have it and if you want me to come back again, you should learn what you can about it. It is not about to go away. ‘
Hello, I understand your pain. Nothing like having to call in sick because of the pain in the scapula. I finally found a doctor who said it is not simply winged scapula. He suggested it is likely parsonage-turner syndrome. It is necessary to make your doctor do an EMG or other nerve condction tests. MRIs will not find this condition. I happen to be with a Doctor now who is actually addressing the issue after ten years of agony. This is only my opinion, but push the doctors with emgs and other tests. Pain killers are not the answer to this problem. Treat the problem not the symptoms. Parsonage Turner Syndrome is rare according to some sites and common according to others. Talk to your doctors, they do work for you.
ReplyDeleteHi Anonymous
ReplyDeleteWell, I agree that the sites out here differ on how rare PTS is. And I agree that doctors should be able to diagnose PTS. In reality for me anyway, mine could not do it until I pointed them in that direction. And even then, one of them insisted that I had FSHD, and then that potential diagnosis had to be “ruled out”. His logic was that since my EMG was not showing nerve damage, that I must have muscular dystrophy. Thing is, the EMG also did not support muscular dystrophy, so he was just guessing. He could see the winging scapula on both sides, and did not think brachial plexus disorders could impact both sides at once. He also thought he saw something in my face, and did not realize that cervical plexus issues could explain that, and that all could happen at once in AN. All he would have to have done was to check his MERCK Manual under winging scapula, and it would have pointed to plexus disorders, and that would have gone to Neuralgic Amyotrophy, aka PTS. I had already had Anterior Interosseous Nerve Syndrome, which was followed by winging scapula a number of years later. Both of these are in the Merck Manual, and both are in a number of websites pertaining to PTS or AN. Still my doctors missed it. I had talked to every one of my doctors about this. I have only seen two I did not have to do most of the diagnostician work for. Thankfully the internet is here and you can search for “winging scapula causes” and get a short list of possibilities. That is how I did it.