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<blockquote data-quote="flutterbee" data-source="post: 128271"><p>Dara - thanks for the hugs.</p><p></p><p>Beth - thanks for the understanding words. By the way, that particular band IS practicing in my house tonight, but I told them they were not taking over the living room. However, I seem to hear them spilling into there now. Going to have to kick them out.</p><p></p><p>BBK - I've only taken the vitamin D supplement once so far (last night) and it didn't seem to upset my stomach. It did seem to cause an intense headache, but that could just be coincidental. I only take it twice a week (50,000 IU twice a week) so I'll keep my eyes open. Thanks for the hugs.</p><p></p><p>susie - I wondered about lupus back before I had the heart attack. In June I had the first, basic lupus test that was negative. This test was positive and then they tested further. I have researched and do know that they can't diagnose based solely on blood tests and I have enough of the other symptoms (just researched that again tonight via the lupus foundation website) to warrant a conversation about it. I printed out everything relevant to what I'm experiencing from that site and it ended up being about 20 pages. And to date, no one has addressed the nerve issues. I'm going to have an EMG which I *thought* was a nerve conduction study, but actually checks for neuro-muscular disorders. I woke up at least half a dozen times last night with my left hand completely numb. You could drive a stake through it numb. The rest of the day it's just various degrees of tingling and numbness, but I do have spreading numbness with use. Plus, the restless leg thing isn't so much restless leg as it feels like all the nerves in my calves are standing on end and I can't stand for anything to touch me. Then I get that feeling in my spine and then my arms. That had me up the night before. And the pain/burning in my hip? I can't walk for more than a few minutes before being in excruciating pain. That's gone on for a while now. A couple of years ago, I picked difficult child up from a friend's house and they were at the store and their dog got out. Chased that damn dog all over the neighborhood (beagle), finally caught her and had to carry her home because she wasn't wearing a collar. I got halfway there and had to stop and was down on my knees on the sidewalk in the cold (it was late fall/early winter) rain. My car was running in the driveway and I asked difficult child - who was 10 years old at the time - if she thought she could bring the car to me. She looked at me like I had grown another head. I barely made it back to the car. We were only a block away. And if I do anything with my right hand - write, wipe the counters, hold a book - it swells and I can hardly put my fingers together. I ran the vacuum the other night and besides being barely able to walk after, I couldn't turn a doorknob with my right hand.</p><p></p><p>And this doesn't even talk about the normal aches and shooting pains. Or the fatigue. Or the mental slowness. sigh.</p><p></p><p>Lisa - I had hoped for more answers, too. Everyone put all their money on the rheumy and when he didn't have any real answers I just fell apart. I feel like we've been spinning our wheels and really aren't any closer to an answer than we were before. In the meantime, my life is in a holding pattern. I live and breathe this everyday and I just can't anymore, yet I keep going back to more research because I feel like I have to do *something*. I don't know how else to deal with it.</p></blockquote><p></p>
[QUOTE="flutterbee, post: 128271"] Dara - thanks for the hugs. Beth - thanks for the understanding words. By the way, that particular band IS practicing in my house tonight, but I told them they were not taking over the living room. However, I seem to hear them spilling into there now. Going to have to kick them out. BBK - I've only taken the vitamin D supplement once so far (last night) and it didn't seem to upset my stomach. It did seem to cause an intense headache, but that could just be coincidental. I only take it twice a week (50,000 IU twice a week) so I'll keep my eyes open. Thanks for the hugs. susie - I wondered about lupus back before I had the heart attack. In June I had the first, basic lupus test that was negative. This test was positive and then they tested further. I have researched and do know that they can't diagnose based solely on blood tests and I have enough of the other symptoms (just researched that again tonight via the lupus foundation website) to warrant a conversation about it. I printed out everything relevant to what I'm experiencing from that site and it ended up being about 20 pages. And to date, no one has addressed the nerve issues. I'm going to have an EMG which I *thought* was a nerve conduction study, but actually checks for neuro-muscular disorders. I woke up at least half a dozen times last night with my left hand completely numb. You could drive a stake through it numb. The rest of the day it's just various degrees of tingling and numbness, but I do have spreading numbness with use. Plus, the restless leg thing isn't so much restless leg as it feels like all the nerves in my calves are standing on end and I can't stand for anything to touch me. Then I get that feeling in my spine and then my arms. That had me up the night before. And the pain/burning in my hip? I can't walk for more than a few minutes before being in excruciating pain. That's gone on for a while now. A couple of years ago, I picked difficult child up from a friend's house and they were at the store and their dog got out. Chased that damn dog all over the neighborhood (beagle), finally caught her and had to carry her home because she wasn't wearing a collar. I got halfway there and had to stop and was down on my knees on the sidewalk in the cold (it was late fall/early winter) rain. My car was running in the driveway and I asked difficult child - who was 10 years old at the time - if she thought she could bring the car to me. She looked at me like I had grown another head. I barely made it back to the car. We were only a block away. And if I do anything with my right hand - write, wipe the counters, hold a book - it swells and I can hardly put my fingers together. I ran the vacuum the other night and besides being barely able to walk after, I couldn't turn a doorknob with my right hand. And this doesn't even talk about the normal aches and shooting pains. Or the fatigue. Or the mental slowness. sigh. Lisa - I had hoped for more answers, too. Everyone put all their money on the rheumy and when he didn't have any real answers I just fell apart. I feel like we've been spinning our wheels and really aren't any closer to an answer than we were before. In the meantime, my life is in a holding pattern. I live and breathe this everyday and I just can't anymore, yet I keep going back to more research because I feel like I have to do *something*. I don't know how else to deal with it. [/QUOTE]
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