Neuro appt. on 24th... pls help me w/my CFS questions PLS HELP!

Discussion in 'Fibromyalgia Main Forum' started by hazygal, Jun 14, 2003.

  1. hazygal

    hazygal New Member

    I'm so nervous to see the "head" of neuro on the 24th here... I'm afraid i'll forget what to say and yet if i bring a list he will get mad...(Happened before).

    Here are my symptoms:

    Crashing fatigue (the uncomfortable kind)

    Muscle weakness

    Hard time breathing when really weak

    Brain Fog

    Cognative problems (like i'm 88 and i'm only 41!)

    Severe PMS

    I get mad and frustrated really easy.....

    I can get weak or fatigued when I get up from the couch to pour my daughter a glass of milk... Or I can from walking from one room to another.

    I thought i may have perimenopause because of my mood swings (yep an i'm on zoloft 2 times a day!) I got on birth control pills and it kicked me into a terrible flair up of the CFS/ME and i've been in this terrible state once again
    for over a month and believe i've had this DD for four years...

    Also, at one time i believed I may have MS so when I got back MRI's(two and were compared over a yr ago) they told me that the lesions on my brain aren't indicative of someone with MS; so being the detective that i am and dying to find out the problem, I had a spinal tap and it was very, very certain that I didn't and do not have MS...

    That was before I even thought I had CFS/ME

    So, thankyou for reading this if you can help me or not..



  2. Shirl

    Shirl New Member

    Just write down what you put here and number the symptoms, then memorize them.

    That is about all the help that I can offer if he/she gets upset if you have a 'list'!
    Unless you can have a list in you handbag, and asked if they mind if you read off what your daily problems are, as you are having a memory problem.

    HOpe you get some help this time around.

    Shalom, Shirl
  3. pammy52

    pammy52 New Member

    So sorry that you are so anxious about your neuro appt.
    I just saw a neuro for the first time this week.
    Thankfully she was not angry that I had a list of symptoms
    concerns and questions.
    It is hard enough to present ourselves to yet one more person and explain our misery, without having to worry
    about thier reaction.
    Would it be possible to have someone accompany you? Maybe
    the doc would be less inclined to have attitude if someone
    was with you. I still think you should have a list on hand.
    Between the fibrofog and anticipating an angry doc you most
    likely will leave without addressing whats most important.
    Also is this the only doctor in this dept.? They all dont
    graduate with an A in bedside manner.
    Good luck and let us know how it goes. Pam
  4. Jen F

    Jen F New Member

    In fact, needing a list to remember your symptoms should be indicative of your symptoms of brain fog, etc!! If he doesn't GET that, then he is not on your side and representation for you might be helpful.

    I bring lists to my doctor and I explain that I write it down so I won't forget -- because I have some memory problems!

    For something as important as an assessment appointment with head Neuro guy, I would think it would be important for you to be careful with your preparation and to WRITE THINGS DOWN.

    GEESH...The fights we have with some doctors to get our needs met....
  5. Jen F

    Jen F New Member

    That's right!!


    Hazygal -- is this neuro doc a visit of your choice or an insurance co evaluation??? i.e. where the insurance co pays?

    If the second, as nervous as you may be, you will have to find a way of standing your ground with the smallest "p.o.' effect possible.

    Do you have a friend you can role play with?
  6. hazygal

    hazygal New Member

    I've got Kaiser, tx for responding
  7. Jen F

    Jen F New Member

    Who or what is Kaizer?

    Jen
  8. viver

    viver New Member

    I take a list with me every time I go to any doc. I tell them straight out and they are happy to work through it. If your guy won't on a regular basis you need to change. Maybe he was just having a bad day. But how can he diagnose and treat to the best possible standard if he doesn't get all the info. I too would try and have someone with me, possibly even get them to hold the list and make sure everything is covered.
    It amazes me how many professional, (and regular, for that matter, but docs should know better,)people don't seem to have a clue of what our lives are like.
    Hope it goes well,
    Viv.
  9. hazygal

    hazygal New Member

    it is called Kaiser Permenente, maybe they only have it out here in So. Calif. It is a medical plan through my husbands work.
  10. Jen F

    Jen F New Member

    is hired by you?

    as opposed to your employers disability insurer?

    cause there's a big difference.

    If the neuro is hired by YOU, then my [our] comments still stand, as you should...

    stand up for yourself, that is :) :)

    It's a little trickier if the neuro is hired by a company doing an "independent" medical evaluation. Nothing "independent" about it when arranged by an insurance company from what I hear...

    there are actual conferences for neuros offerred by insurance companies on how to deal with CFS/FM and find the people NOT insurable...

    Good luck! Hope it works out okay for you.