Online Again - FINALLY!!!

Discussion in 'The Watercooler' started by susiestar, Nov 11, 2011.

  1. susiestar

    susiestar Roll With It

    Sorry about being absent again. Our ISP spent 10 days "losing" work orders, etc... AFTER we were patient for 2 weeks while they dealt with problems in the trunk line to our neighborhood. Part of that was while we were at the hospital, but the last week was the reason I didn't post after that.

    We did feel the earthquakes, not sure how many made the news nationally, but there were four days where we felt something, but only one was considered a big deal on our local news. I have no clue why the others were not a big deal, esp as my family has lived here for over 30 yrs and this is the first time we ever felt anything like that. We are all fine, no damage to our homes or persons or property. It felt really strange when the tremors hit. Not sure how to explain it.

    The neuro says that the problems are not starting in her brain. They saw nothing on the eeg at all. Jess suppressed the shaking most of the time because not suppressing it most of the time sends her pain into the stratosphere. She tried, but when she was sitting there with tears streaming down her face from the pain, working to not give in to big sobs because that makes her hurt even more, and the nurses and reg doctor on the floor did nothing but say they were sorry, well, she had to do what she could to be able to handle the pain.

    I am giving up on neuros. There is NO point to further appts for anything but her migraines. Again, she was on an anti seizure medication during the eeg - 300 mgs of neurontin (gabapentin) twice a day. So they saw no absence seizures because we could tell at 200 mgs twice a day that it was stopping them. I asked several times for them to take her off of the medication and was told that they would call the neurologist. I don't much care. I will fight anyone who tries to take her off of the neurontin unless she comes up with side effect problems because it is controlling her migraines. That alone is a miracle, in my opinion. She was dancing around a couple days ago because she realized that she had only had one migraine in the 2-3 days before, all during, and the 3-4 days after her period. This is the FIRST time she has not had a migraine that entire time. It is also the first time that the migraine went away completely with one dose of imitrex. Usually it would get better for 6-8 hrs and then come back full power. (We have tried other migraine medications, but none work as well as imitrex for her).

    While I still feel there is a neurological component to her problems, and I do NOT believe the docs when they say that it isn't possible to have a seizure and not have it register on an eeg, I am moving on. I won't spend my time/energy/daughter's time continuing to fight to get a neuro to listen and try to do something. I will fight to keep her on neurontin, but I think our family doctor will rx that for migraine prevention if the neuro won't continue it. But I am done with neuros for the time being.

    I am goign to get her into a rheumatologist and maybe a doctor who deals more with muscles. Still doing some research. I am going to try to get her in to see the rheumatologist that I love. Not sure if he will see her as he usually treats adults, but she is 16 and is close to adulthood, so he might see her.

    Thanks for ALL your support and good wishes and helping keep me sane as I deal with all of this. with-o you I would be far less able to help Jess because I would have lost my mind a long time ago. I hope you had a pretty good week or so, and will get back up to speed here on the board.

    You were all in my thoughts and prayers every day, even when I couldn't get online.
  2. buddy

    buddy New Member

    Oh my my my..... the epilepsy sites online are FULL of stories of seizure disorders that never showed up on eeg. My son's didn't at one place and did at another. It has to be caught and that is the problem with seizures, they happen whenever, not on schedule. Our docs flat out said that, he was going to be put on medications anyway. Q had terrible headaches too. But the anti seizure medications took care of them for the most part...well that is because they are post seizure headaches in his case. Could be for Jess too. They maybe haven't put it together. When you tell her story I keep t hinking, some day she is going to be one of those "medical mysteries" stories where people go for years with people telling them nothing is wrong just because they couldn't find it. Then they find out what it is and try to rationalize why people missed it.

    The most important thing of all is that she has your support. So many people lose the comfort of family and start to feel "crazy" because everyone doubts them. That is worse than the doctors missing it. She is blessed to have you in her corner.
  3. InsaneCdn

    InsaneCdn Well-Known Member

    Too bad there isn't a way for Jess to see Q's doctor...!
  4. Hound dog

    Hound dog Nana's are Beautiful

    Susie, saying he didn't see anything on the eeg and that he didn't think it was brain related didn't necessarily mean the man doesn't believe you. (or did he come out and say that?)

    It used to be long ago docs had no issues with admitting they didn't hold all the answers. Most were humble enough to be happy with the answers they did have to offer. Medicine has made great advances to be sure, and some not quite as great as they'd have you to believe. But somewhere along the line........most docs lost the ability to admit they still don't have all the answers. Not every disease or disorder of the human body has been discovered and cured or even been made treatable. Add in to this that I'm sure new diseases and disorders are evolving right along with us, which makes it even harder.

    Jess's symptoms are very very real, and very scary. It is clear there is something going on there, regardless of the results of certain tests at certain times ect. It's possible they don't have the means to "test" for what she has and it doesn't show up on tests we have at this point, be it neuro test, lab test ect. This doesn't mean she doesn't have her symptoms, doesn't mean there is not a disease or disorder process at work. What it very well may mean is that whatever is going on with her, at this point in time they don't have the knowledge of what it is or diagnosis the possible causes.

    There is no logical medical knowledge to explain how and why Travis survived his birth alone. Equally, there is no explanation as to how he survived and did as well as he has done. Obviously he did, but it's the how and why part that has left them stumped because other children didn't. His odds were a million to one, out of those odds the "one" that would make it would live their lives in a vegetative state. It just doesn't make sense with what they know at this point in time. Doesn't mean that 50 yrs from now some doctor will say Oh, well see it was like this.......and then this happened because of this......Know what I mean??

    If this neuro thinks outside the box and is willing to work with you and Jess, honestly? I'd stick it out with him a while. If he's willing to give it his best shot, I'd let him try.

    I know it's been a long haul for you and Jess, and you know I totally get your disappointment and frustration. Saying that, I'd also understand if you just feel like this guy is not the answer. I was just putting that out there for you to think about. (all the while cursing under my breath because I was hoping something would show up on that eeg)

  5. susiestar

    susiestar Roll With It

    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.
  6. HaoZi

    HaoZi Guest

    Question: Is there any chance it's starting somewhere in the spinal column instead of the brain?
  7. Hound dog

    Hound dog Nana's are Beautiful

    Good suggestion HaoZi!!

    And darned my awful memory, but has Jess had an MRI or CAT scan?

    And what is that neuro muscular electrode test?? Oh well dammit it's on the tip of my tongue........where they test how the impulses are going to and from the muscles........ack! I hate my brain today.

    Of course, you get these only if a doctor will cooperate and order them.

    I had 2 docs think outside the box with Travis.........and between those two, and one very common sense oriented psychiatrist who ordered every blood test offered, we got a cascade of dxes. Now while that sounds still took like 4 yrs at the least, not counting the polycythemia which is theorized to be the root cause of them all. That one wasn't until after his stroke at 18.