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This time if the doctor blows you off go to another doctor until you find one that listens to you! I'm sorry you have to go through this and pray this new doctor can figure it out and fix it for you.
Posts: 1132 | Registered: A Long Time Ago!
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All right. Saw the neurologist Friday. He gave me a very preliminary opinion- he doesn't think I'm actually having seizures, but rather "something else." What that something else is, we're not sure.
Based on family history and my age, he's thinking it's most likely one of three things: MS, Thyroid problems, or just a very, VERY bad reaction to stress coupled with anxiety attacks.
Going in for bloodwork on Wednesday(to check for MS and thyroid amongst other things), MRI and EEG on Friday, and ENG a week from Wednesday.
My fear of hospitals is out and full force. Prayers and good vibes would really, really be appreciated.
Posts: 1591 | Registered: Jul 2005
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well, if its a thyroid thing, that could be an easy fix, with a prescription for synthroid perhaps. still, we'll keep you in our prayers. Best of luck.
Posts: 813 | Registered: Nov 1999
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I'm afraid of hospitals because I got a needle repeatedly shoved into my spine by a med student who didn't know what he was doing. I was eight.
Now, I get shaky, nervous, and start breathing really hard whenever I get near one. I avoided visiting my mom and sister after they had surgery(a few years apart) because of it.
I'm just afraid of getting hurt. I'm glad the doc didn't prescribe a spinal tap this time, because I'd be screaming running the other direction.
Posts: 1591 | Registered: Jul 2005
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I feel for you. Our son had febrile seizures several times and had to be hospitalized for them, so I know how scary they can be. My thoughts and prayers go out for you.
Posts: 80 | Registered: Nov 2003
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Tinros, that is a perfectly sane and reasonable response to hospitals, in that case.
I'm afraid of hospitals because I used to work in two different hospitals and I know how many people hospitals routinely maim and kill.
I'm sure that's not very reassuring, and I'm sorry about that. I wish you the best and hope you get wonderful treatment, which I know many hospitals give.
Posts: 6246 | Registered: Aug 2004
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quote:Originally posted by Tatiana: I'm afraid of hospitals because I used to work in two different hospitals and I know how many people hospitals routinely maim and kill.
I don't want to derail this thread at all, but as a question on the side... hospitals where-abouts? This seems as bit extreme.
Posts: 433 | Registered: Feb 2005
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Well, one study I saw (conducted by a reputable source ... I'm sure anyone with google-fu can find it) found that 1/3 of patients in hospitals are physically harmed by mistakes in care.
I'm not saying this because I am trying to dis anyone, or dissuade anyone from getting lifesaving treatment. I'm just trying to warn people to be wise consumers of the medical product. Know what everything prescribed for you is for, and what your correct dosage is. Check and be sure your name is on the label of your IV bag. Know every test that's ordered and what the doctor hopes to find from it. Ask what the results were, and how it affects your diagnosis, and prognosis, and treatment options. Do your own research and don't hesitate to ask the doctors and nurses any questions you have. Suggest possible diagnoses, and possible treatment options. Good doctors are delighted at patients that take such an interest in their own cases.
Posts: 6246 | Registered: Aug 2004
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Blood work got pushed back to tomorrow, because it snowed last night, and we didn't want to risk driving the un-cleared roads.
So, I'll be going in tomorrow before my hair appointment. My best friend is coming with us to the hospital for the MRI and EEG on Friday. Hopefully everything turns out all right.
Thanks for all the well-wishes, guys. I really appreciate it.
Posts: 1591 | Registered: Jul 2005
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quote:I'm just trying to warn people to be wise consumers of the medical product. Know what everything prescribed for you is for, and what your correct dosage is. Check and be sure your name is on the label of your IV bag. Know every test that's ordered and what the doctor hopes to find from it. Ask what the results were, and how it affects your diagnosis, and prognosis, and treatment options. Do your own research and don't hesitate to ask the doctors and nurses any questions you have.
YES. I have an allergy to rubbing alcohol and several medications and I have to be constantly vigilant (even while in labor) to make sure they don't come near me, even with a bright red allergy allert bracelet on, all rubbing alcohol removed from the room, a big bottle of betadine next to my bed, a sign on the door listing my allergies and "NO RUBBING ALCOHOL IN THIS ROOM" in bright red, and a similar sheet right on top of my chart...
And I've been prescribed medications I can't have for different reasons four times in the last two years. I have found suggesting an alternative goes a lot better than "I can't have this" or just taking what they try to give me.
Posts: 21182 | Registered: Sep 2004
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My biggest thanks and sincerest gratitude to everyone who's been thinking of me and praying for me.
The blood test was quick and relatively painless, but I won't know the results for quite a while.
EEG went just fine, although I didn't manage to stay asleep. I thought I did, and I was snoring, but apparently I'd fall asleep and immediately wake back up. When they had me do rapid breathing, I very nearly passed out, but they said they couldn't get anything from it until the neurologist looked at it. They can only determine that I do, in fact, have a brain in my head, and not just a potato.
The MRI was fine, except for a minor moment of panic about halfway through. I was calmed by the thoughts of all my friends, online and real life, that are praying for me and holding my hand(virtually) through all this. So, thank you all.
I'll let you know when I get results.
Posts: 1591 | Registered: Jul 2005
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Well, I have at least a partial diagnosis- I don't have the results from the EEG, MRI, or blood tests yet, but the ENG showed something.
I have Ocular Vestibular Reflex Dysfunction. In other words, my eyes and ears aren't communicating properly, and it's making me really dizzy. It's fairly common, and if I do the exercises they gave me every day, I should be better in two to three months.
I'm okay to drive again, for now. It shouldn't affect that. So... here's to hoping that's the only thing wrong with me.
Posts: 1591 | Registered: Jul 2005
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Yes! Something that can be fixed! What are the exercises? Do they make you dizzy or sick to do them?
Posts: 6246 | Registered: Aug 2004
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Yeah. It's panic attacks. ALL the time. Why did I not ever notice my pulse racing or my breathing rate increasing? Because they're elevated to BEGIN with. My psychologist that I've begun seeing recently clocked my pulse at 107, resting, and my breathing at 18 times a minute, resting. After taking a half an hour to do some relaxation and meditation, my breathing was down to 8 times an hour, and I was feeling clear-headed and energetic.
So, I'm on Effexor(which I'm hesitant to take) for now, but I don't need to go see the neurologist again. He said I can just find a regular physician to take care of it from now on, and to keep seeing the psychologist.
Another thing the psychologist and I found out, is that my tension seems to manifest in clenching my jaw and tightening the muscles in my face. She thinks this may be what's causing the headaches.
Meanwhile, I've got my application in to Ohio University... hopefully the change of environment will help me get through this.
Posts: 1591 | Registered: Jul 2005
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quote:Originally posted by ClaudiaTherese: Tinros, I'm so glad you are getting this checked out. If it turns out not to be a seizure type of problem, I do want you to remember that panic problems can be hard to diagnose (often people hyperventilate without realizing it), but it is a real problem and is treatable. Just in case you don't get anywhere with the EEG, don't lose hope, okay?
Tinros, I've been thinking along these lines from the beginning, but I'm not surprised that it took awhile to get to a diagnosis that fits for you. When one's normal state is so revved up, it is hard to recognize that this isn't how it should be.
But there are lots of ways to help fix this. You are doing a big one, which is trying to make your life more stable. Medications can help, but there are a lot of nonmedical therapies which can help, and those are a great place to start. Let me know if I can help get more information or in any other way.
[I see you are getting skilled at meditation and relaxation techniques. Awesome! ]
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Tinros, I am so happy to hear it's not seizures. I have been following your story since the beginning. I used to work for a neurologist who saw a lot of seizure patients. I wouldn't wish that on anyone. When I was having some depression and anxiety problems, Effexor was my wonder drug. I was on it for a few years and under the supervision of my doctor, was able to stop taking them. Just remember, it's when you start to feel good, that you know it's working, so don't stop taking it at that time.
Good luck and keep us posted!
Posts: 2064 | Registered: Dec 2003
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