Strange Dr Appointment: pretty long

Discussion in 'Fibromyalgia Main Forum' started by shar6710, Nov 13, 2006.

  1. shar6710

    shar6710 New Member

    First a little backgroud: I crashed back in August as I seem to do every year and have been fighting back since.

    In Sept I had an incident in my house and my neighbors took me to the ER. They thought I'd had a stroke but my MRI came back normal. I had an EEG about three weeks ago and so I had an appt Thurs to get the results.

    I had been doing better so I decided to try to drive myself for the first time since early September. I made sure I took extra rest Wed and Thurs morning.

    To make a long story a little shorter, I had trouble finding my shoes, then the bad bad weim didn't want to go in her crate, etc and so by the time I drove to the office I was not doing well.

    I rested for a bit in the car, then walked to the entrance where I rested in a wheelchair some more. But still I was barely able to make it in to the office. They must have seen me struggling to open the door because they already had my chart up and took me straight back onto an exam table so I could lay down.

    The dr was in almost immediately. After talking a little about my current condition and about how I had thought I was doing better he broke the news that my EEG results weren't back. So I told him about all the notes and the CFS tool kit that I had left in my car and he went out and got them so we could discuss them.

    He also did a bit of a poor man's tilt table test. He had a little trouble taking my BP(went from 120/80 to 120/50)
    when I sat upright because I kept listing and my body was doing it's best Michael J. Fox imitation. So as I sat there literally jerking around I asked what the heck IS this. He said "ya know I'm standing here thinking the same thing..."

    This isn't the first time I've had these jerkinng movements but the first time he's seen them.

    We had discussed me going back to a neurologist after the ER incident if the EEG didn't show anything but the problem is in the last two years I've had EVERY test, some of them 2 and 3 times. But now he's convinced that he's missed something, that CFS couldn't be responsible for my neuro symptoms and that I should go to the Cleveland Clinic for a full workup.

    I wish everyone's doctor had his bedside manner. He is very nice, sympathetic, never rushes the appt, and is willing to discuss and explain things to me. He's also honest when he doesn't know something and I think that's important. Drs aren't gods and its only when they try to act like they are that it causes problems.

    In the meantime I'm going to have another sleep test to see if my cpap needs adjustment or anything new turns up there. It's amazing that I don't realize how poor my sleep is until I actually sleep well as I did one night recently.

    My neighbors came to the rescue again, one driving me home and the other bringing my truck. I also got a lecture about not having one of them take me in the first place.

    I spent two days in bed sleeping, I even missed lunch one day which is unheard of. My left arm hurt just like it did after the Sept incident but my leg didn't this time. Today I'm doing better although now that I've been up for an hour an a half I feel the need for another nap.

    I sure will be glad when this all gets figured out!

    Shar
  2. mezombie

    mezombie Member

    I'm so sorry to hear you're doing so badly!

    But it's great to hear you have a compassionate and intelligent doctor!

    The Cleveland Clinic is supposed to be very good at figuring out complex health problems like yours.

    I would caution you, though, NOT to mention CFS if possible. Some of these clinics, like the Mayo clinic, have some pretty old-fashioned ideas about CFS, and may not look thoroughly at everything if they hear that's your diagnosis.

    Remember, CFS is a diagnosis of exclusion. If something else is causing your symptoms, you don't have it (and believe me, you don't want it!)

    So I hope your doctor will write to them and explain everything he's looked into and that he simply doesn't know what you have.

    Hang in there!
  3. IntuneJune

    IntuneJune New Member

    Your doctor does sound wonderful.

    It is so much better when doctor's are honest with us.

    I posted "I am doomed" which may not exactly fit your situation but does resemble the info your first poster gave you.

    Good luck, June
  4. 1sweetie

    1sweetie New Member

    I'm sorry to hear of your problems but it sounds as if you have found one of the good doctors.

    This "mess" gets old doesn't it. I don't have any words of wisdom but I do hope you find relief.

    I was happy to see your post on The Porch thread. It was a nice surprise for me. Thanks for your encouragement.

    Here is a (((HUG)))) to help you get through this flare.

  5. shar6710

    shar6710 New Member

    MeZombie, thanks for the good suggestions. I'm not sure if I'll go or not. We spent thousands of dollars trying to find a "real" answer before I was dx with the CFS. I can't imagine what other tests could be done. I think the only thing I haven't had is the tilt table. Even if I have POTS it's just one of those poorly understood conditions that has no real cure. I'm not sure I'm interested in adding to my medical conditions list. Although if it would help get my disability on my first try...

    Intunejune, I checked out your doomed post and I can relate. Back in Sept I made the mistake of saying to the ER front desk that I had CFS and I could practically see her eyes glaze over. But once I saw the triage nurse they took me straight back of course all the tests were normal. The ER Dr did offer to admit me for observation but I just figured it was a waste of several more hundred dollars.

    1sweetie, yes my dr is very kind. hopefully I'll see you on the porch from time to time.

    Thanks again and best wishes to you all,
    Shar
  6. Gothbubbles

    Gothbubbles New Member

    I have the same spasms too, mine are pretty severe. You can read more about them in other posts.

    I've heard klonipin helps but I will talk to my doc and try it before I recommend it.