Discussion in 'Your Living Room' started by CarolineJ., Sep 23, 2009.

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  1. thornapple

    thornapple New Member

    Re: Feeling totally dismissed, demoralized

    I go in to a new doc with my meds printed out, a history printed out, neither of which I know they will read in the scant 15 minutes I will see him/her, but most importantly, I tell them why I am there and what I want to get out of my office visit. I don't make them guess. Like:
    1. I want advice on what I and/or you can do to improve my health condition--this is what I have been diagnosed with.
    2. I need a refill on this particular drug.
    3. I want to check my high blood cholesterol levels and discuss medications and althernative treatments for this.

    not sure this helps with docs who have bad attitudes, but I only see those once (and really, I should ask them for a refund for wasting my valuable time!)

    I used to think I should educate those docs, but their minds are closed so it is kind of difficult.

    I had a doc once who held a watch up to my ear and asked if I could hear it ticking. I said yes. He said, "Well, then you aren't deaf".

    I had real hearing test from another doctor and now have hearing aides.
  2. jwebb

    jwebb New Member

    Re: Feeling totally dismissed, demoralized

    Hi Caroline!
    So sorry you had a terrible experience. This is the way my family doctor was-he wouldn't even send me to an ENT. Another doctor in the practice was the one who finally gave me an referral. It's very frustrating.

    My husband went to see a man by the name of Bryan Young at the London Health Science center when we lived in London and was very impressed with him. He was considered the top Neurologists in London at that time. I know it's not Toronto but thought I would pass the info along.
    Did you get the information about the support group in Toronto-Don Lynch organizes it-his email address is
    [email protected]

    Best of luck!
  3. CarolineJ.

    CarolineJ. New Member

  4. dizzydeac

    dizzydeac New Member

    Re: Feeling totally dismissed, demoralized

    Caroline-I'm sorry for your bad experience and glad that you have gotten some great advice from others so that you feel empowered. That is very important as a patient. You must have good communication and trust with your dr. One piece of advice I would like to offer is to find out if the neurologist you are going to see specializes in migraines. I have MAV and MM. I was first diagnosed with MAV by my neurologist who is wonderful. Who by the way, I was referred to by my ENT because he specialized in migraines. My Neurologist,when my symptoms appeared to be getting worse and I started having MM symptoms as well;he personally setup an appointment with the best otolaryngologist/neurotologist in the area.

    I think good drs understand the limits of their knowledge and specialty and should know drs in the area who are good in a specific specialty and refer you to them. It seems like medicine today is all about specialists. Doctors are knowledgeable in there in specialty and don't seem to keep their skill levels up on other areas sad to say.. Hope all goes well with your neurologist and neurotologist visits.:)
  5. wiggly-wobbly

    wiggly-wobbly New Member

    Re: Feeling totally dismissed, demoralized

    I'm so glad to hear that you have searched and found some doctors to check next. Just remember me and my FOUR YEARS of this treatment and doctor bouncing & being told I was crazy!!! (I finally found this site and then heard of the neuroTOlogist.) My husband now has to drive me over an hour to see her, but BOY is it worth it!!!

    Survivedit had a good point too, remember to come to the appointment as pleasant and positive as possible (OK, that was my version). My doctor says she always works me into her schedule because I'm nice and only call if I REALLY need to see her.

    The MAV + MM is also an issue with me. It was even hard for my current doctor to be sure what symptoms were strictly MM vs MAV vs regular old migraine. She has ONE other patient with almost mirror symptoms as me, and I have told her to please feel free to use any info she gets from my treatment to help the other person, as we are both "one-off" type of cases (or at least a bit more complex as to diagnosing).

    The "formal" diagnosis was finally stamped when I tried the Meniett and it helped, but that was down the road from the testing (hearing, VNG, physical exam). Even at her initial exam though, she gave the diagnosis of MM (noting that there may be some migraine component also) so she helped my sanity if nothing else!

    I'm glad you are pushing on and getting help. OH!!!! Last suggestion- I try not to say much negative about previous docs, as some do seem to feel the need to defend other docs. I just mention thast I saw Dr. X who was not able to help, and then get on to busness with the new doc. If they press, I start with the "nice version" of the horrible visit (the doc was stumped with my case, so I was coming to you who specialize in more complex cases, or whatever. If they REALLY want to know, I give the short dirty facts, but most don't waste their time.). Anyway, good luck!!
  6. ShariN

    ShariN New Member

    Re: Feeling totally dismissed, demoralized

    Hay.. don't feel bad.

    When I broke my spine waist down and and all kinds of other damage.. the local ER Doc wanted to just send me home even though I could not feel or move my left leg from my waist down.
    Only my DH there telling them what he would do to them if they did not properly treat me....
    Even with the proof of the MRI's, Xrays and so on... they wanted to just send me home... only have Military insurance you know. Sigh ~~

    Anyway... back on track.

    When I had my first major drop attack from MM 28 years ago.. could not get the Doc's to tell me what was wrong. They thought I was on drugs or something even though the blood tests turned up clean. It is hard to put into words how badly that made me feel. Anyone that knows me, knew I have never done drugs, drank or anything like that for that matter. Spent years going from Doc to Doc getting the same thing. Them not wanting to do their jobs and I am quite sure a lot of that was because I was a young woman back then.

    If finally found by accident...a very good specialist and he really knew what he was doing. Was the first Doc I had been to that did not keep trying to make up things to cover their lack of knowledge.

    You need to find a good Doc, one that cares, knowledgeable and will listen. Keep looking until you find the right one! Hang in there!!
  7. aqua76239

    aqua76239 New Member

    Re: Feeling totally dismissed, demoralized

    I just went to ENT last week and heard something simular. He dismissed "weird"symptoms and told me that for MD he can't really recommend anything else other than Meclizine and low sodium diet. Then he actually told me to come back for follow up. Ah, excuse me, follow up to what? I'm so glad that I was able to read on this forum that my symtomps are not "weird" since so many other people are experiencing it and I'm not imagining it!
  8. queenmom

    queenmom New Member

    Re: Feeling totally dismissed, demoralized

    I am so sorry that this has happened to you. Is there any other doctor, in your area, you can see?

    I was just diagnosed this month with MM, and I can tell you I felt for the first time since 2005, that I wasn't crazy. I am going to be praying that you find the right doctor soon so you can begin to find peace.

  9. Taximom5

    Taximom5 New Member

    Re: Feeling totally dismissed, demoralized

    Sounds to me like the doctor is the one with the hearing problem.

    I agree about seeing a neruOtologist, especially if someone here is happy with one that you can see.

    Have you tried John of Ohio's regimen and/or Henry Sullivan's chiropractic cure? Personally, I think that they are BOTH beneficial, and have noticed big improvements.

    Salt and caffeine seem to have no effect for me, but everyone is different. But foods may play a role for some people, especially wheat and dairy, which can cause neuro symptoms in affected people--and for some, neuro can be the only symptom.

    B12 deficiency can cause headache, dizziness, hearing loss, memory problems--any of this sound familiar? It ought to be the first thing checked--except in this country, they fail to understand that serum levels under 500 can cause these symptoms, and they tell you you are fine if your levels are above 200 (which is way too low). In Japan, anything under 650 is considered to need treatment. Also, you can have normal serum levels of B12 but be deficient in intrinsic factor, which means you can't absorb/use the B12 you have in your system.

    I've noticed that swimming helps me ENORMOUSLY--are you in good enough shape that you can just get into a pool and float without passing out and/or drowning?

    I had to go on a long plane trip with the beginnings of a headache and airsickness. I usually avoid meds like the plague, but this time I took 1/2 Advil and 1/2 a meclizine, and was surprised at how much better I felt. These are over-the-counter meds, but please ask your pharmacist if they interfere or react with anything else you might be taking.

    I hope things get better for you soon.

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