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<blockquote data-quote="susiestar" data-source="post: 478761" data-attributes="member: 1233"><p>I don't know if he believes us or not. I haven't been able to get through to his office from a week before we went in. I get a busy signal or get through and when I choose which option from the menu it goes to voicemail - and after the beep I get hung up on. This is probably because they are doing renovations on his floor of the office building because the nurses were having the same problem and eventually had to use his cell phone (which # of course patients do NOT get, understandably). but it IS frustrating.</p><p></p><p>I do know that the hospital doctor told us that the neuro said we did not have to make an appointment to go over the results, that the neuro said he was "done" with us. I will know what that means when I can get through to them. I try 2-3 times a day, and will until I get an answer from them. </p><p></p><p>At this point I would probably kiss the feet of a doctor who said he didn't know what was going on but would continue the neurontin because it seems to be helping. The hospital doctor seemed to think that because there were no absence seizures on the eeg then she wasn't having them. Both J and I told him that when the medication was increased to 100 mg twice a day they got better and when she went to 200 mg twice a day they went away as far as we could tell. So far the docs have told us, and the eeg techs, that if seizures are not seen on the eeg then they are not happening and the problems are not "from the brain". that is the exact phrase they used, and is contrary to much of what I have found doing my own research. </p><p></p><p>They also say that since her head/arms/torso did not do the pulling to one side thing while she was in the hospital, then it isn't what is really happening and she is having "garden variety charley horses in her neck" and we are "interpreting them emotionally to see something more serious". One medication student told me that since I used the word torticollis to describe it, the docs think I have done too much research and am seeing what i want to see. She thought it was bs on the doctor's part, but is a medication student sent to take history and to check certain things, so the docs are not going to take her word for it. I asked if I should take video when it happens again and the hospital doctor said that I could but it wouldn't mean anything unless a medical doctor took the video. in my opinion he is full of it. He was nice, but except for the second day we were there didn't even put his body into the room with us. </p><p></p><p>Jess did have her legs do the rock-hard spasm and twist into a pretzel thing on Wed night when we were there. I couldn't straighten her legs out, the muscles were in such a spasm. We have NO idea if the eeg showed anything because at the time she had some of the leads off/loose/messed up. The eeg showed huge black lines all over, but all it means is that the leads were loose. We had asked the nurse three times about it, but they said all they do is to make sure that no one trips on the cords and that something is being recorded. It was the next morning when an eeg tech came in and said that it had been off/messed up for almost 15 hrs and why didn't we say anything to the nurse. I was really upset, but making a stink would not help at that time. When her legs did their thing, I did press the button to mark the problem, and I called the nurse in. He was shocked, said he hadn't seen anything like that before. He called the doctor on duty and she was surprised by it also, but didn't know anything about the eeg or if it was doing what it was supposed to. Jess usually forces her legs straight as soon as it happens, usually by hooking her foot over the edge of a chair or bed adn moving backward to force it straight (sometimes it spasms so hard that husband cannot even force it straight with all his strength).</p><p></p><p>I made J not force it straight until the doctor saw it so that we had some documentation of it if the eeg didn't show it. She did a neuro exam and got NO response until after J forced the leg straight and J and I massaged the muscles for about fifteen minutes. </p><p></p><p>I do think that something neuro is going on. I am becoming resigned to not getting a neurologist to diagnosis it and am going to push for her to stay on the neurontin because it is making a BIG difference in the absence seizures. It is adding about 3 hours, at a minimum, to her day. Hours that were lost to the absence seizures that never seemed to be caught in their short eegs and were treated by medications during any longer seizure. </p><p></p><p>IF/when we get another appointment with the neuro, I am going to ask about seizures that can't be diagnosis'd by eeg, and other conditions. But I won't stop there. Now I am going to push for a rheumatologist or some other type of specialist. With her hands going numb and not working, I am worried about MS more than any other disorder. I know it needs a neuro, but around here it seems that often a rheumatologist or even a chiropractor is usually the doctor to pick up on it and then work to get the reg doctor to do the referral to the MS specialist/neuro. There is a substantial probability that she has some type of autoimmune problem going on also, either as part of the picture or all of it, just because the women on my side of the family all seem to have some type of autoimmune problem that starts in their teens/early 20s. So we are going to address that also. </p><p></p><p>I truly appreciate what you are saying about seizures not caught on tests, and about docs who admit they don't have answers. It is nice to have others that I trust confirm what I have found through research. Esp after so many docs act like I am an idiot for thinking that they don't have all the answers. At this point I don't even care what they call it. I just want them to make it better.</p></blockquote><p></p>
[QUOTE="susiestar, post: 478761, member: 1233"] I don't know if he believes us or not. I haven't been able to get through to his office from a week before we went in. I get a busy signal or get through and when I choose which option from the menu it goes to voicemail - and after the beep I get hung up on. This is probably because they are doing renovations on his floor of the office building because the nurses were having the same problem and eventually had to use his cell phone (which # of course patients do NOT get, understandably). but it IS frustrating. I do know that the hospital doctor told us that the neuro said we did not have to make an appointment to go over the results, that the neuro said he was "done" with us. I will know what that means when I can get through to them. I try 2-3 times a day, and will until I get an answer from them. At this point I would probably kiss the feet of a doctor who said he didn't know what was going on but would continue the neurontin because it seems to be helping. The hospital doctor seemed to think that because there were no absence seizures on the eeg then she wasn't having them. Both J and I told him that when the medication was increased to 100 mg twice a day they got better and when she went to 200 mg twice a day they went away as far as we could tell. So far the docs have told us, and the eeg techs, that if seizures are not seen on the eeg then they are not happening and the problems are not "from the brain". that is the exact phrase they used, and is contrary to much of what I have found doing my own research. They also say that since her head/arms/torso did not do the pulling to one side thing while she was in the hospital, then it isn't what is really happening and she is having "garden variety charley horses in her neck" and we are "interpreting them emotionally to see something more serious". One medication student told me that since I used the word torticollis to describe it, the docs think I have done too much research and am seeing what i want to see. She thought it was bs on the doctor's part, but is a medication student sent to take history and to check certain things, so the docs are not going to take her word for it. I asked if I should take video when it happens again and the hospital doctor said that I could but it wouldn't mean anything unless a medical doctor took the video. in my opinion he is full of it. He was nice, but except for the second day we were there didn't even put his body into the room with us. Jess did have her legs do the rock-hard spasm and twist into a pretzel thing on Wed night when we were there. I couldn't straighten her legs out, the muscles were in such a spasm. We have NO idea if the eeg showed anything because at the time she had some of the leads off/loose/messed up. The eeg showed huge black lines all over, but all it means is that the leads were loose. We had asked the nurse three times about it, but they said all they do is to make sure that no one trips on the cords and that something is being recorded. It was the next morning when an eeg tech came in and said that it had been off/messed up for almost 15 hrs and why didn't we say anything to the nurse. I was really upset, but making a stink would not help at that time. When her legs did their thing, I did press the button to mark the problem, and I called the nurse in. He was shocked, said he hadn't seen anything like that before. He called the doctor on duty and she was surprised by it also, but didn't know anything about the eeg or if it was doing what it was supposed to. Jess usually forces her legs straight as soon as it happens, usually by hooking her foot over the edge of a chair or bed adn moving backward to force it straight (sometimes it spasms so hard that husband cannot even force it straight with all his strength). I made J not force it straight until the doctor saw it so that we had some documentation of it if the eeg didn't show it. She did a neuro exam and got NO response until after J forced the leg straight and J and I massaged the muscles for about fifteen minutes. I do think that something neuro is going on. I am becoming resigned to not getting a neurologist to diagnosis it and am going to push for her to stay on the neurontin because it is making a BIG difference in the absence seizures. It is adding about 3 hours, at a minimum, to her day. Hours that were lost to the absence seizures that never seemed to be caught in their short eegs and were treated by medications during any longer seizure. IF/when we get another appointment with the neuro, I am going to ask about seizures that can't be diagnosis'd by eeg, and other conditions. But I won't stop there. Now I am going to push for a rheumatologist or some other type of specialist. With her hands going numb and not working, I am worried about MS more than any other disorder. I know it needs a neuro, but around here it seems that often a rheumatologist or even a chiropractor is usually the doctor to pick up on it and then work to get the reg doctor to do the referral to the MS specialist/neuro. There is a substantial probability that she has some type of autoimmune problem going on also, either as part of the picture or all of it, just because the women on my side of the family all seem to have some type of autoimmune problem that starts in their teens/early 20s. So we are going to address that also. I truly appreciate what you are saying about seizures not caught on tests, and about docs who admit they don't have answers. It is nice to have others that I trust confirm what I have found through research. Esp after so many docs act like I am an idiot for thinking that they don't have all the answers. At this point I don't even care what they call it. I just want them to make it better. [/QUOTE]
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