See my Neuro on 15th... HELP!!! Mri results

Discussion in 'Fibromyalgia Main Forum' started by hazygal, Sep 4, 2003.

  1. hazygal

    hazygal New Member

    This will be the third MRI without anyone saying anything is wrong with me after they see the MRI images... Even though I do have 3 brain lesions. Extreme fatigue, some muscle achiness, wierd siezure like episodes, lose energy the least bit of exertion, hypermobility in my knees... It goes on....I've been told I could have hypercoagulation or "sticky blood" from a view on-line here. I've been tested by a Rheumy and,(in her words)do not have FM. I am extremely intimidated by this Neuro. I feel he has my life in his hands. People tell me to go in with questions then not to go in with questions... If he says there isn't anything really wrong that he can see from the MRI I just don't know how i'm going to react. At this point I really do want it to be something i've been searching for almost three years now. At least I could treat it and if not say to all the people out there who think i'm a lazy nut that "this is the name of my problem!" I know you all know what I mean. I've some questions to ask you all... Should I mention any illness that may mimic my illness or close to it? If he finds nothing wrong with me, should I ask to see a microbilogist or immunologist?????? Or virologist? Been to a Rheumy already thanks for you help. Hazygal...
    [This Message was Edited on 09/04/2003]
    [This Message was Edited on 09/04/2003]

    EZBRUZR New Member

    This is a Post Transplant.
    madwolf contributed this early summer. it has helped me with questions your asking,when I had them. Hope you too will gain for this.

    How to Talk to Your Doctor 06/30/03 05:03 AM

    I found this this morning as I was wandering, sleepless, through cyberland. Without a doubt, this is the best essay yet on the topic. Unfortunately, no author is credited that I could see, so I can't give credit where it is due. I wish I had written it.


    How to Talk to Doctors

    Be assertive and take an active role to improve your health care.

    As a person with chronic inflammatory arthritis, I have seen many physicians, surgeons and specialists. Here's a few things I do to make appointments with my doctors run smoothly. Using these strategies, my doctors have been more open to trying new treatments that I suggest. At the same time, it's helped to identify other health problems that could have been overlooked. It's also kept me from falling between cracks in the health care system and caught small mistakes made by doctors. The end result is that my health has improved, going to see the doctor is no longer stressful or alarming, and I find myself eagerly anticipating my next visit.

    Keep a record of your health events.
    Keep a daily log or journal of events related to your health care. You don't need to write down something every day, just write down the important events related to your health. Here are some suggestions:
    blood test results -- make a table on the first page of your journal and fill it in at your next visit..
    dates of corticosteroid injections
    dates and locations of diagnostic procedures (X-Rays, MRI, bone scan)
    dates starting and stopping a medication
    dates medication missed
    stressful events in your life
    unusual symptoms - quantify it: Instead of "I feel feverish today", write: "Today my temperature was 101 degrees Fahrenheit". Instead of "I'm very thirsty", write "I drank 4 L of water today and I'm still thirsty".
    typical symptoms - quantify it: Rate your pain, stiffness, emotions on a 10-point scale, where 1 = "Not noticable" and 10 = "Can't move!". Example: October 16: Back pain=4, Knee swelling=7, Anxiety=2
    Later, you will find this information invaluable when you see another doctor for the first time. It's even great for your regular doctor. If you are like me, my regular doctors have a two-inch thick folder of paperwork about me. When I want a corticosteroid injection, rather than looking in the file, my rheumatologist asks me: "How many injections have you had in that joint?". Do you think he wants to spend time looking through that huge file? No. But you know the answer, because you've written it down in your journal.
    Keeping the journal on a computer is a good idea. You can print a selection of it any time you need one. How to organize the diary is up to you, but over time I have split up my journal into these sections:

    Doctors. A list of doctors' full names, specialty, address, telephone numbers, fax number, email (if you're lucky), receptionists' names, date of first visit, and even the date of final visit if you are no longer a patient there. When I see a new doctor, I bring this along because sometimes they want to contact a previous doctor. I print out two copies of this list: one for my home phone book and one for my daily planner.
    Blood Tests. Record your blood test results and the date the blood was drawn. By recording a copy yourself, you can keep everything together and correlate changes in your body with changes in your blood. In my journal, I include the lab's stated limits for normal people and my doctor's interpretation of the test. I print out a copy of the table and take it with me to each appointment to remind me to ask for the latest blood test results.
    Condensed Journal. Every month, summarize the regular journal in this section. Just the facts. It's short, point form, one-line summaries. I send this to a new doctor before the first appointment. To the doctor, this is a gold mine. It's a complete history already prepared! She doesn't have to ask as many questions and I don't worry about forgetting an important event in my medical history. Here is a sample:
    Two weeks after the corticosteroid, my knee has filled up with fluid again.
    High thirst (drinking 4 L of water daily) still continuting
    1st visit with Dr. Lochnan
    Dr. Lochnan: Blood test results: No calcium in blood
    Radioactive iodine uptake thyroid scan done

    Liver enzyme levels high (AST is 116)
    Methotrexate and folic acid stopped
    Second liver enzyme level test shows AST is down to 65
    Dr. Lochnan's diagnosis: I have a hyper functioning thyroid nodule, NOT Grave's disease. Referral to Dr. Eisen.

    Regular Journal. The gory details. Record how you felt, what your doctor said, exact procedures that you had, including locations and dates. Remember, you'll be going over it again to make the monthly summary. So be expressive. If you're experiencing pain or other symptoms on a daily basis, you can keep track of your progress by using the 10-point scale as mentioned above. Write down everything you feel is significant. I keep this part private. Often just writing things down makes me feel better, because I know I don't need to think about it anymore. If what I'm experiencing later turns out to be an important symptom, it's down there in black and white so I don't have to remember it weeks later at the doctor's office.
    Read as much as you can about your illness and treatments.
    Since you're reading this document, you're already on the right track! But you need a good solid resource at your fingertips. Go to a bookstore and buy the following:
    One of the latest guide to prescription drugs. If the one you have is three years old, throw it out and get a new one. More than once I have been misled by an older edition of this type of guide. I currently have three:
    Long JW, Rybacki JJ: The Essential Guide To Prescription Drugs 2000. Harper Resource, New York, 1999. Note that these books are post-dated for longer bookstore shelf-life. From October onward, you can usually find next year's edition.
    Silverman HM, ed.: The Pill Book, 8th Edition. Bantam Books 1998.
    Berner MS, Rotenberg GN: Canadian Medical Association new guide to prescription and over-the-counter drugs. The Reader's Digest Association (Canada) Ltd., Montreal, 1996. This is the best drug book I've ever seen. It's much more than just drug listings. It's much cheaper and faster to order from Canada directly than to special-order the book through Amazon.
    I recommend that you avoid purchasing a pharmacist's book. It lists every single side effect ever reported for each drug, easily leading you to attribute any little change in your body to the medication you're taking.
    A medical dictionary. I find the paperback book The Bantam Medical Dictionary (Bantam Books, 1990) to be the best combination of price and readability. There are other dictionaries with more terms, but the definitions are more complicated. The cross-referencing in the Bantam Medical Dictionary is excellent. Later, if you outgrow the basic medical dictionary and become interested in the Big Picture, I highly recommend the following textbook: Totora GJ: Principles of Anatomy and Physiology, 9th ed. John Wiley & Sons, New York, 1999. If you're an information junkie like me, move on up to Taber's Cyclopedic Medical Dictionary 18th ed. (F. A. Davis Company, 1997). However, some of you may be overwhelmed by Taber's graphic, full-color photos of human diseases.
    Prioritize appointment objectives.
    Before your appointment, type up a list of things that you wish to have addressed. Remember that your doctor is busy and won't have a lot of time, often only 10 or 15 minutes. Put the list in point form only, to keep you from reading directly off the sheet, and to prevent distracting your doctor. Sort them by what you think the priority should be. Print out two copies, one for yourself and one for your doctor. Keep it short and simple. Here's a sample: Dr. Feelgood, March 1st 1997. 3pm
    Current medications:

    Cytotec 250 micrograms twice daily
    Voltaren 50 mg slow release twice daily
    Discuss: (most important first)
    my occasional dizziness
    stomach ache
    obtain last session's blood test result
    what are the symptoms of a yeast infection?
    inquire about the risk of developing an ulcer
    (if time) discuss the recent reports in the media that NSAID use can prevent Alzheimer's.

    It's important to give a copy to your doctor at the start of the appointment. There might be a symptom that triggers a warning flag but you thought was unimportant. The priority of the items on the list may change during your meeting, but as long as you have the list your doctor will be able to cover the important ones.
    Be Assertive.
    When you're in the waiting room, resist the temptation to read your favorite magazine. Instead, read over your agenda. Picture what you're going to say, and how you're going to say it. Get the point where you know exactly what is on your list without looking at it. You want the discussion to be natural and smooth.
    When you are talking with your doctor, remember to avoid being passive AND avoid being aggressive. Instead, be assertive. There is a good discussion with examples on being assertive at Mediconsult's web site.

    Take a pen in with you and write down notes/answers to your questions next to your agenda items. If you can't write because of arthritis or other reasons, ask your doctor to write down key words for you.

    KEY POINT: AVOID bringing published material and printouts to the appointment. (The only exception should be your little agenda sheet). Such information is distracting for your doctor. They love paper! I end up feeling ignored. Don't keep it to the end of the appointment and present it at the last minute, either. If you give it to him at the end of your appointment, the article may not get read, or it will distract the doctor from his next patient. It takes time for your doctor to read and digest new information.

    Instead, fax / mail / drop-off the information BEFOREHAND with a covering note saying that you'd "like to discuss this at our next appointment, on March 23". I have never met a doctor who didn't appreciate this. However, when you do send them something, make certain that you READ it over three times yourself. Look up words in your medical dictionary. Learn to pronounce and spell the hard words. My rheumatologist was very impressed when I knew how to spell sulfasalazine, because he always got it wrong himself. If the words are very difficult, at least make your best effort to understand the introduction and conclusion, the important parts. Later, you can ask your doctor to clear up any confusion.

    Doctors are people too, and anything you can do to make their task easier means they appreciate you more. You will earn their respect. The street goes two ways. Remember in school when you talked about your teachers outside? Guess what... they talked about their students too. The same applies to doctors. I've heard the receptionists and the doctors talk about their patients -- which ones they liked and which ones were annoying.

    Treat the receptionists with respect too. They often get dumped on and can be real sticks in the mud at times. They have bad days just like everyone else. Be very friendly with them. Never get angry at them for a long waiting period. If it's a big concern, write it down in your journal, and bring it up with your doctor at the next appointment -- just don't be aggressive! Be assertive.

    Avoiding the Power Struggle - Convincing a skeptical doctor to try something new.
    At times, a meeting with your doctor can feel like a battle. Perhaps you've read about a new treatment on the news that sounds exciting. Who knows your body better than yourself? You've read the drug information book, you know what symptoms to expect. You're being an educated patient. And yet here's the doctor shooting holes in your arguments and resisting your suggestions of new treatments to look into. What's gone wrong?
    First of all, remember what I said about bringing paper into the meeting. DON'T bring in an article. Fax it a few days ahead of time with a small note. But there is something else to consider: the medium itself, and how it is delivered, rather than the message. A printout from the web (even this web page, I'm sorry to say) has less impact than a professionally-printed, multi-colored pamphlet. My doctors are well aware of the misinformation and scams present on the web. In fact, they instantly turn off when I say the "Internet". So, I've stopped saying "Internet" or "the web". Now I say, "This information is from a non-profit organization that specializes in ..."

    Do all that you can to earn the respect of your doctor. To do this, you need to make your doctor's job easier. You've done that already by keeping a diary, being educated, using an agenda and being assertive. One extra skill that takes a lot of practice is clearing a mental path for your doctor to follow and allowing her to do her job. An example will help illustrate my point.

    When I first started taking minocycline, I did not go to my doctor and say "I'm experiencing a Jarisch-Herxheimer Reaction". Leave the diagnosing to them - it's their job. Instead, describe the symptoms. If they don't make the connection, give them a hint, but be subtle. Pretend you just thought of it. Say "you know, I think I've heard about this type of thing before, only it was in people who had Lyme disease. They often get a fever after taking antibiotics too, don't they?" By leaving the diagnosing to your doctors but helping them along, you can safely leverage their knowledge and earn their respect at the same.

    You see, it's entirely possible that you may be wrong. Once upon a time, I was convinced that the annoying thirst I was experiencing was due to methotrexate. After all, the drug book recommended I drink lots of fluid with this drug. But when I told my doctor about this, he said the medication I was taking could not cause me to be thirsty. The next time we met, I again told him that I was thirsty, and insisted it was the methotrexate. He sidestepped the issue and quietly snuck in some extra blood tests that I wasn't aware of. As it turned out, he uncovered a problem in my thyroid gland, something completely unexpected. I was correct to be assertive because the symptom turned out to be very important. But I was wrong to be telling him what my diagnosis should be. If I had brought up the subject differently, he would have told me what tests he was running instead of being secretive.

    Always let doctors think of things for themselves. You're coming to the doctor to ask for their professional advice, not to tell them how to treat you. If you want to try IV-delivered antibiotic therapy for inflammatory arthritis, you'll have to guide your doctor so he will conclude on his own that IV antibiotic therapy will be beneficial. You can help by earning their respect and providing them with the information that they ask for. Sometimes it will take two or three more appointments. Stick with it, be assertive, be patient.

    Hopefully you have found these suggestions beneficial. Go to it!

    Here's a summary in case you read like I do, skipping right to the end for the good parts:
    Keep a medical diary of all significant health-related events.
    Educate yourself: Seek out new treatments. Know everything about the medications you are taking. Understand terminology using your medical dictionary.
    Write down a concise list of items to discuss before each appointment. Bring two copies.
    Don't bring any other photocopies, Internet printouts, or newspaper clippings to the meeting. Instead, fax them a few days ahead with a polite note saying that you'd like to discuss them during your appointment. Be careful when using documents without references and potentially misleading sources like the Internet.
    Be assertive rather than aggressive or passive.
    Be educated about your illness and symptoms, but leave the final diagnosing to your doctor.