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Leggs
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Questions to ask neurologist?
« on: Jun 22nd, 2005, 7:14pm » |
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Okay, I saw a boob who diagnosed me with clusters AND trigeminal neuralgia, and prescribed seizure medicine, and blew me off when I told him I could not tolerate it. He also put his hand in myface when I started to tell him about my cycle, and said "I don't want to hear about any of that, just tell me what is going on NOW." Well, the pattern has a lot to do with the solution.Went back to my internist, and I have been referred to Emory Nuerology in Atlanta July 12.
So, what advice to you have for me in going up there? I am glad they send me all of the paper work/survey about history ahead of time, so I can really think it through. I have a list of stuff I can tell them does NOT work.
Another thing, I am going to try to clean all the junk out of my diet between now and then, and get exercising so we can rule that kind of thing out.
The months since my visit to the neurologist have been absolute HELL, and I don't want this visit to be wasted. I know a large part of it is the guy was just an not a very nice person, so pray I get one of the good ones!!!!!
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Kris_in_SJ
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Re: Questions to ask neurologist?
« Reply #1 on: Jun 22nd, 2005, 8:56pm » |
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Hi,
We all go through at least one bad doc before finding the one who knows what the #$#@@ he/she's talking about.
First, there's a big difference between trigeminal neuralgia (which is severe facial pain accompanied by uncontrollable tics, facial expressions, etc.) Clusters are very simply called "suicide headaches" for a reason. The pain almost always hits on one side, ramping up quickly on a pain scale. You can't sit still. You pace, bang things onto your head, or pull your hair (my special treatment).
My recommendations would be the following:
1. Take the cluster quiz to the left and print out the results for your doc.
2. Read the medical info in the link to the left. If it fits, take it to your doc.
3. Ask him if he has special knowledge regarding the treatment of cluster headaches -vs- other known types of headaches.
4. Ask him how many clusterheads he is currently treating.
5. Read, memorize and print out the article in the link below. If he doesn't recommend either Oxygen or Trex injections, or another recommended abortive in this article, keep looking.
6. If he takes your face into his hands and gives you any kind of bullshit diagnosis, keep looking.
Here's the link that saved my life:
http://www.brightok.net/~mnjday/chtherapy.pdf
PF Wishes and Good Luck!
Kris
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ClusterChuck
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Re: Questions to ask neurologist?
« Reply #2 on: Jun 22nd, 2005, 11:33pm » |
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I would also bring the printout about oxygen treatment. DO NOT leave the office without a script for oxygen! Don't let him/her tell you it is not worth it. It MUST be with a non-rebreather mask, at, up to, 15 litre per minute (lpm).
But read all the info at the left, and those on OUCH, and print out whatever you feel is important, and bring it to the neuro.
A good neuro will work WITH you for your treatment. He/she will listen to what you want to try and then discuss it with you. Remember, after you do all your reading here, most likely, you will know more than the doctor about these headaches.
Good luck, and keep us informed.
Chuck
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bnfreeman
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Re: Questions to ask neurologist?
« Reply #3 on: Jun 22nd, 2005, 11:37pm » |
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I live in Atlanta too and there is one headache specialist there, I think her name is Sarah DeRosett, and I have heard good things about her. I also have a family member who sees another neuro there for her headaches. History is important. No matter who the doctor is make sure they listen to everything you have to say! If they take offense to you actully being educated about your headaches then I say RUN. Then email me and I will give you my docs name. He listens well. (He's at St. Josephs) Anyways Good Luck and let us know how it goes!
Brandi
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sandie99
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Re: Questions to ask neurologist?
« Reply #4 on: Jun 23rd, 2005, 2:26am » |
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Bad docs... Oh, I've met few of those!
My advice: read as much as you can about ch & treatments. The more you know the more you can tell the new doc. Some of them really don't have a clue about what ch is.
And remember: they can't force you to take a med you don't want to take! I've tried so many meds by now that I finally know what works with my head.
Be firm, get what YOU want. And ask about possible side effects! Those meds & treatmenst have an impact on your life, so your opinion should matter the most. It teh doc doesn't listen, it's time to change a doc!
Wishing you luck & PF time,
Sanna/sandie99
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lionsound
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Re: Questions to ask neurologist?
« Reply #5 on: Jun 23rd, 2005, 10:25am » |
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Do you have a headache diary? it's never too late to start one if you don't. even a few weeks of info(dates,intensity, times, durations, meds) can show a lot about you.
Also remember to ask about an ER protocol for yourself. And do not leave there without a treatment plan which includes the next time you will speak to the doctor and see the doctor for follow-up. this is Crucial if you are starting new meds. You should also know how to reach your doc in an emergency or if you have a question.
Good luck!
let us know how everything goes.
be well and PF
-lionsound
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Bob P
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Re: Questions to ask neurologist?
« Reply #6 on: Jun 23rd, 2005, 10:39am » |
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I'm with some of the others on this.
Don't ask anything. Tell them what you want!
You walk in and say, I have clsuter headaches and I want to try oxygen, other abortive of your choice, preventative of your choice.
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Linda_Howell
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Re: Questions to ask neurologist?
« Reply #7 on: Jun 23rd, 2005, 2:01pm » |
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I agree with everyone else here, but the most important question, and you can do this when you're on the phone making an appointement, is to ask if he has ever treated or has experience with Cluster Headaches. If not....don't waste your time and $$$
If he has...then do all of the above. Chuck is correct in that once you have read everything here, you will, no doubt be a lot more informed than the Neurologist.
Any Dr. that put a hand in my face because he had no interest in what I was saying....would need to go see a Orthopedic surgeon.
Good luck to you. Linda
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Jasen
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Re: Questions to ask neurologist?
« Reply #8 on: Jun 25th, 2005, 4:40pm » |
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I keep a diery, date, time, pain level, symptoms, duration. And type it up on the computer to give to my Neuro. She said this is great and makes it a lot easier to figure out whats going on with me. A lot clearer then asking qustions and me trying to remember.
From there on out it can, was for me, a lot of trial and error to figure out what worked for me.
I'm very sensitive to some of these newer abortive meds. and had some realy bad rebounds, which landed me in the ER a couple of times.
Better days 
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Leggs
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Re: Questions to ask neurologist?
« Reply #9 on: Jun 27th, 2005, 1:21pm » |
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Geeze, I forgot to click the button to send me an email for replies.
First off Kris, I was diagnosed with clusters and post trauma migraines in 1986. Before I had my female equipment removed in 2002, I would have a constant headache, either a migraine or clusters. After the operation, NO MIGRAINES and my CH episodes became very distinct, Feb and July.
THAT is what I was trying to tell the *sshole! How I no longer had migraines, and I got my "regular" cluster in February, but things changed in the middle of it, and it didn't go away like normal. THAT is when he sticks his hand up and says "I don't want to hear about any of THAT, tell me what is going on NOW."
I did take the cluster quiz, that's how I found you all 4 years ago, and one of the main ways I could tell if I was having a migraine or both was the thing about wanting to be quite in a dark room, or wanting to avoid light, oh, and the puking. I am puke free with clusters. I think I would rather have puking migraines than clusters.
The clusters CHANGED, and it scared the crap out of me, and the change happened after a car wreck. THEN the office also tells me when I told them I was in a car wreck, "Oh, we are not going to talk about that here."
Besides all you told me to print, I think I am just going to print your letter, and use it as a check list!
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Leggs
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Re: Questions to ask neurologist?
« Reply #10 on: Jun 27th, 2005, 1:22pm » |
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on Jun 22nd, 2005, 11:33pm, ClusterChuck wrote:I would also bring the printout about oxygen treatment. DO NOT leave the office without a script for oxygen! Don't let him/her tell you it is not worth it. It MUST be with a non-rebreather mask, at, up to, 15 litre per minute (lpm).
But read all the info at the left, and those on OUCH, and print out whatever you feel is important, and bring it to the neuro.
A good neuro will work WITH you for your treatment. He/she will listen to what you want to try and then discuss it with you. Remember, after you do all your reading here, most likely, you will know more than the doctor about these headaches.
Good luck, and keep us informed.
Chuck |
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Oxygen is something no one has ever tried, and it just seems like it would be a natural for me! I always wack out one way or another from meds (God help me for all the mess they suggest for TN), puking, dizzy, dingy, stuttering, and I got kids to take care of. I just think abortive would be a better idea.
I am with you on the working with you. I ended up at Emory in sort of a weird way in 1986, my sister and husband went to school there, so I was kind of like a case study, but it was GREAT very thorough. So when this local guy is telling me to shut up when I am telling him about something that happened 2 months ago, I knew he was not the "work with me" kind of guy, but more the "do what I tell you or I won't play with you anymore."
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| « Last Edit: Jun 27th, 2005, 1:28pm by Leggs » |
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Leggs
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Re: Questions to ask neurologist?
« Reply #11 on: Jun 27th, 2005, 1:34pm » |
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on Jun 23rd, 2005, 10:25am, lionsound wrote:Do you have a headache diary? it's never too late to start one if you don't. even a few weeks of info(dates,intensity, times, durations, meds) can show a lot about you.
Also remember to ask about an ER protocol for yourself. And do not leave there without a treatment plan which includes the next time you will speak to the doctor and see the doctor for follow-up. this is Crucial if you are starting new meds. You should also know how to reach your doc in an emergency or if you have a question.
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The diary is exactly what I was going to get going, it will be a good two weeks worth of data. I was also going to just write down my history somewhat, so I won't leave things out. The thing that is scaring the &^%( out of me, is how the issues have CHANGED since the accident, and even changed since they told me I now have TN. As much stuff as I have read on the internet, I could very well have something else, occipital neuralgia which is mis diagnosed, or MS or something. I just need a non-ego maniac to listen to me and work out a treatment plan.
I have a local Dr., where I don't have to drive hours away, I they will probably be able to work with prescribing stuff as recommended, and then I will have follow ups at Emory.
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Leggs
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Re: Questions to ask neurologist?
« Reply #12 on: Jun 27th, 2005, 1:44pm » |
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on Jun 23rd, 2005, 2:26am, sandie99 wrote:
And remember: they can't force you to take a med you don't want to take! I've tried so many meds by now that I finally know what works with my head.
Be firm, get what YOU want. And ask about possible side effects! Those meds & treatmenst have an impact on your life, so your opinion should matter the most. It teh doc doesn't listen, it's time to change a doc! |
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I am VERY sensitive to meds, that's why I am surprised no one has ever said oxygen, it's worth a try anyway. I am very ready to change docs, in fact, the first thing I am going to recount to him when I get in the office, is what the last guy did, and ask him how he feels about THAT. If I don't like what he says, I will leave. What are they going to do, arrest me?
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Leggs
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Re: Questions to ask neurologist?
« Reply #13 on: Jun 27th, 2005, 1:46pm » |
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I really need to keep the diary. I have noticed I have been half stupid from the pain lately, can't remember things, can't remember words. At least I had an MRI so I know I don't have a tumor or a bleeding brain or something.
Linda, you crack me up about causing him to need an orthopedic surgeon.. If he were standing up, maybe a urologist or a specialist for "disfunctions." 
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Kiwiinoz58
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Re: Questions to ask neurologist?
« Reply #14 on: Jun 27th, 2005, 5:30pm » |
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We sure do have fun with docs and diognosis don't we. After treating me for sinus infections and hay fever it was thought I had trigrminal neuralgia and was sent to a facio maxillo surgeon. He was the rudest doc I've ever seen, told me it was only muscular and gave me jaw exercises which made my face ache worse than ever. Then his assistant said it was the fault of my dentures and that I should get new ones every 5 years to stop it. I laughed as they are $2000 a set and I'm on a pension.
Cheers and good luck with the doctor!
Jacqs(Kiwi)
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Leggs
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Re: Questions to ask neurologist?
« Reply #15 on: Jun 27th, 2005, 10:18pm » |
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Not like CH isn't enough fun for one human, in reading about TN, I think I am misdiagnosed, it's an easy thing to misdiagnose, and can be confused with other mess.
That is a total load of garbage about them saying you needed to do facial exercises???? With TN, brushing your teeth, rubbing your face (which I do MADLY during CH) can set it off. What a bunch of boobs!!!
I was confused about the TN stuff, it said usually older people, after dental or facial surgery, of which I had none. It just doesn't add up. There are lots of other things it could be, since all this new/nonCH stuff came up since my car was hit in the rear when I was at a dead stop. Whenever I try to bring that up to the doctors, they blow me off!
I have a friend in Perth, she says the medical stuff is fine for basic issues, but if you need any kind of specialist, it's only for the rich. Is that true in your case?
Wishing you some relief!
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Kiwiinoz58
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Re: Questions to ask neurologist?
« Reply #16 on: Jun 28th, 2005, 10:39am » |
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The extra pain with the exercises was dreadful as my CH's give me huge pain in the jaw, cheek, sinus and ear as well as head. In Australia we can either see a specialist privately which does cost a fair bit or see one at a public hospital. If seeing one at hospital it doesn't cost because we have medicare, which is the public health system. The neuro I see has private rooms but sees me at the hospital. The main disadvantage of that is the wait is usually very long. So far the extra verap I'm taking hasn't worked very well but it's early days yet. I still get several CH's 4-5 days out of 7 with lots of shadows. I'm still hoping to get to try oxygen. One thing seems to be for sure, there's not much in the way of general rules for CH's, we are all diferent. Good luck with your lot.
Cheers,
Jacqs(Kiwi)
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Topical
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Re: Questions to ask neurologist?
« Reply #17 on: Jul 3rd, 2005, 7:27pm » |
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Hey Leggs. Very sorry to read about your problem. Have you asked for an MRI or other diagnostic tests? If not and you have insurance push for it or other tests. The fact you had an accident is troubling.
This advice is for anyone in your position.
Read up and bring your knowledge base up as high as possible. Know all the options available to you. Don't be emotional, stay calm and be professional in your attitude during the appointment. Have them write down their exact diagnosis for you and study up on it.
Be polite but persistent.
"Why can't I try this?"
"What are the side effects?" If they are too troubling to yourself and they still want you to try it out say, "What else can we try first?"
Be forceful.
"I want to try this."
"I don't want to try that."
"This is not working, lets try something else."
Remain open to their recommended treatment. Try it if you haven't before. Give it a real test hoping that it is the solution. If it doesn't work, say so and that you don't want to try it again. If it has bad side effects you can't handle then it is a last resort option.
Here is a good question. You are being forceful while at the same time showing them you know something about your condition. You aren't asking if you can try it. That's already assumed.
"Others have had great success with this, I want to try it out but what are the possible side effects?"
Follow your doctor's advice. With each drug failure I would reschedule an appointment or ask if we could give <XXXX> a try. Again and again this went on, eventually the doc came around and we tried out what I wanted. (It didn't work btw.)
Show that you are flexible while at the same time realistic. I will try what they recommended if I can handle the known side effects and give it a real chance. This helped when I read about O2. The doctor knew me by this time. The trust was there. Ouila! It worked as an abortive. She was very glad to hear this after all we had tried.
If you are at the end of the line with a doctor then this question comes to mind:
"I think it is wise to get second opinions. Are there any other doctor's you can recommend? Who are recognized as the best neuroligists in this field around this area?" Doctors will not be to put off by this as they do want to expand their own knowledge. They do want to help. At the same time they don't want to act like they are ignorant of your condition. Even if you go to another doctor the original doc will likely follow up behind the scenes. That will help others who come to the first doctor.
You can ask your insurance company the same question if you do not want to ask the doc. "Do they specialize in headache disorders?" That information should be known. If they don't know get the list of names and ask call them prior to your appointment. There are also Neurology organizations in cities who may be able to help out.
I have had good luck with a neuro group. I believe they consult one another on cases. My first visit was not too producive, the second was more productive as the doctor consulted other sources. If they want you to try something ask if they have any free samples. That might even trigger more options the doctor hadn't considered. I wound up with a prescription and a second free drug to try out first. Neither worked.
I went along with their advice but I will let them know if it doesn't work well or why the side effects ruled out the med. Sometimes I felt like a guinea pig. Your doctor dismissing what you said would make me get out the phone book. I hope the next one works out for you. I would say out of the 4 docs I have had only one was so-so the others were great.
A diary is an excellent suggestion as others have stated. I block out memories of the attacks as they are best forgotten. I hope you can find a doctor who you can build a trust in. Make it a 'we' experience instead of an 'I' or 'You'. I have a feeling that you will meet a good neuro. You are right in seeking help elsewhere.
If you are diagnosed CH. push for O2 as an abortive if you haven't tried it. If they want you to try another med do so but ask for the O2 script just in case the drug didn't work. Keep pushing for it tactfully when you can. I can't emphasize enough that you must build a relationship with a doctor you believe in. Don't give up, you can find some relief, believe it. Try to stay positive after failed drugs. That's another one they can rule out. It is progress. Let us know how it went.
Take care.
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| « Last Edit: Jul 3rd, 2005, 7:29pm by Topical » |
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Cooked Brain
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Re: Questions to ask neurologist?
« Reply #18 on: Jul 5th, 2005, 7:47pm » |
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HOW and WHY
let him answer these... 
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Leggs
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Re: Questions to ask neurologist?
« Reply #19 on: Jul 6th, 2005, 7:15pm » |
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Sorry I kinda zoned out on the topic for a while, as you can see under "kudzu busted the clusters, now what" (so I won't go into the details), I am doing much better.
I LOVE YOUR ANSWER COOKED BRAIN!!!! YOU ARE REALLY IN SYNC WITH WHAT HAS BEEN GOING ON WITH ME!!!!
WHY IS ALL THIS BIZARRE $HIT HAPPENING IN ADDITION TO MY CLUSTERS????? AIN'T THEY BAD ENOUGH?????,
AND HOW AND I GOING TO FUNCTION AND RUN A HOME AND HOLD A JOB ON ALL THE BIZARRE DRUGS YOU GIVE ME?????
I appreciate Topical's input too, some I agree with some I don't. I WON'T try something once, I ask the side effect FIRST, if it makes you drowsy it damn near puts me in a coma. IE: I can't hardly take 25mg benedryl, and am only using 3mg melatonin! They, the docs, have to give YOU some credit for knowing what your body can handle, and they often don't. Being too "polite" when I doctor put his hand in my face and said "I don't want to hear about your history, I want to know what is going on NOW" is what got me to where I am looking for a new guy now. I should have WALKED OUT when he did that garbage.
My mistake, I waited way to long for things to progress to where I had no meds, and no doctor.
First things first, I AM going to get a neuro eventually, but still waiting for all my record to line up so the department I am seeing can make the referral to the best doctor.
Next Wednesday, I have an appointment with a pain specialist, ie: anesthesiologist. I really like what I have heard about his practice, he has a variety of treatments, open to suggestions, second opinions, and you getting your life back, instead of being in a drug induced stupor the rest of your days
The BEST thing I have heard so far, he does not like you to go to the emergency room before calling him, so he can keep tabs on things. I had a doctor who said call when I get there, but the ER refused, and gave me a drug test first, until I was about insane!
I will let you all know how things progress!
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millie the episodic
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Re: Questions to ask neurologist?
« Reply #20 on: Jul 7th, 2005, 10:14am » |
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What was the drug test supposed to be for? To make sure that only their poisons were in your body. That is why I talk myself out of going to the ER and SUFFER through these damn things and cuss myself for doing it, because the so called drs and nurses at the ER in my town are a joke, and the only seem to want to label you, they don't really know what is going on and then I don't think that they care.
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Leggs
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Re: Questions to ask neurologist?
« Reply #21 on: Jul 7th, 2005, 10:20am » |
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on Jul 7th, 2005, 10:14am, millie the episodic wrote:| What was the drug test supposed to be for? To make sure that only their poisons were in your body. That is why I talk myself out of going to the ER and SUFFER through these damn things and cuss myself for doing it, because the so called drs and nurses at the ER in my town are a joke, and the only seem to want to label you, they don't really know what is going on and then I don't think that they care. |
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It made no sense to me at all. Besides, I had ONE eye dialated, a cluster trait. That is what I did, I suffered through it, what were they going to do anyway. The ER where I used to live was a joke too, I just avoid them all together.
Get this, I know I wrote it somewhere else here, but the boob who gave me the test at 2am, examines me, orders the test, and doesn't even come back to have the courtesy to see me again. The er was totally dead that night too. Turns out, a few years later, I was busted for cocaine and other drug charges....
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| « Last Edit: Jul 9th, 2005, 8:18pm by Leggs » |
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Some people have one of those days,
I Have One Of Those Lives, And I Love It
ihootlaili
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Topical
New Board Old Timer
Posts: 256
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Re: Questions to ask neurologist?
« Reply #22 on: Jul 8th, 2005, 1:04am » |
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So he does a drug test it comes up positive for coke and then diagnoses "withdrawal symptoms". That's crap. Sue for pain and suffering!
Did you ever see that Seinfeld show where Elaine went from doctor to doctor trying to get help? Your experiences remind me so much of that.
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