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Trying to get in to see Dr. Klimas (INIM) - need help from her patients

Discussion in 'ME/CFS Doctors' started by Buster, Apr 2, 2014.

  1. Buster

    Buster

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    I have been calling the Institute for Neuro Immune Medicine (INIM) once a week for 7 months now. The front desk staff at the University are instructed not to put calls (from those who are not existing patients) through to anyone at the INIM. So I have been unable to speak with anyone who might be able to provide a general idea of the wait to see a doctor – will it be 3 months, 6 months, a year, or should assume I will never get in? About 6 weeks ago they set up on option on their phone line so that prospective new patients could leave a message to get on a wait list. I did that, but again, I have no idea of when I might get in to see someone there.

    I've been frustrated and upset that I can't ask this question of anyone when it would mean the world to me to have even the slightest bit of information. My life is on hold (as it is for most of you here), and I don't think Dr. Klimas is aware of the frustration that a lot of prospective patients like myself are feeling from their initial experience at INIM --especially at a time when they are already feeling so ill, alone, and perhaps neglected by the medical community. I think if Dr. Klimas knew, she might insure that they were given some information by her staff about how long the wait time is to get in to see a doctor there, (posting an update on their website or facebook page would be a helpful and easy thing to do). The Institute for Neuro Immune Medicine is my first choice for healthcare at this time and that is why I’ve been so invested in hearing just a few details from them.

    Can any existing patients there suggest what I can do in order to find out when I might get in to see a doctor there? Would any exiting patients be willing to make an inquiry on my behalf?

    Thanks so much.
    Valentijn likes this.
  2. SOC

    SOC Moderator and Senior Member

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    I feel your frustration. Even for current patients, communication through the NOVA system has been poor. The transition from Univ of Miami to NOVA has been rough. I know Drs Klimas and Rey are trying to get everything working, but there's far too much to do and not nearly enough people to do it. :(

    Based on my experience in communicating through the NOVA system (which I, too, find very frustrating), I suggest the following:

    1. Call the front desk number and politely but very firmly tell them that you have called repeatedly for 7 months and you would like to make an appointment before you hang up again. Don't ask for answers to questions, you won't get them. Take any appointment they'll give you so that you become a current patient. Don't get upset with them, just refuse to hang up until you get a reasonable answer.

    2. Don't try to get an appt with Dr Klimas. I think she's not taking patients at the moment. I heard there's a new doctor coming online at INIM -- someone who's been working with Drs Klimas/Rey for a while. She might be the easiest doc to get to see. In any case, don't specify a doctor, say you'll take any doctor at INIM. You need to get in the door.

    3. If they won't make an appointment and will only put you on the waiting list, you have a bigger problem. On the greasy wheel principle, I'd call the front desk every day and ask how long the wait is to see an INIM doctor. Eventually the front desk people will get upset and frustrated enough at having to deal with patients continually calling they'll try to get an answer for you. ;) It's a rather dirty trick, but desperate times call for desperate measures.

    I'll be seeing Dr Rey in a couple of weeks. I can ask her how long the waiting list is. I'll also let her know prospective patients are having a very frustrating experience getting on the waiting list.
    beaker, Valentijn, Sushi and 3 others like this.
  3. Buster

    Buster

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    Thanks SOC. That would be great if you could talk to Dr. Rey. I will try your suggestions.
  4. SOC

    SOC Moderator and Senior Member

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    It would probably help (darned cognitive dysfunction) if you remind me via PM on the 12th or 13th of April. With luck, one of us will remember. ;)
    Last edited: Apr 2, 2014
  5. Buster

    Buster

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    i will do that thanks!
  6. PhoenixBurger

    PhoenixBurger Senior Member

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    A year ago I had to wait about 7 months to see Dr. Rey. And today I sat on hold for an hour waiting for someone to pick up. They never did. We called the same phone number at the 55 minute mark from another cell phone and while i was still on hold on the 1st phone, someone picked up after 5 minutes on the 2nd phone. I guess the moral of the story is, if you wait an hour to have someone take your call, call back, or call from two phones lol.
    beaker, SOC and Valentijn like this.
  7. Buster

    Buster

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    That's pretty crazy. In any other situation I'd be looking elsewhere, but since there is no elsewhere...
    How were you first able to get in, did they have a wait list you put your name?
  8. SOC

    SOC Moderator and Senior Member

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    Have you tried any other of the top specialists? Enlander and Levine are in the New York area. Lerner (he doesn't do immune stuff, though) is in the Detroit suburbs. Montoya and Kogelnik in California are good. And there are others.
  9. acer2000

    acer2000 Senior Member

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    They have a waiting list now? Thats an improvement. Like you I started calling soon after they opened their new center. I called every week for months only to be told they were already full, had no waiting list, had no cancellation list, and never intended on making one. I was encouraged to keep "calling back".

    Its a big improvement if they are managing a waiting list now. Their old "system" was really bad.
  10. SOC

    SOC Moderator and Senior Member

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    Yes, trying to get in right after INIM opened was really bad timing. Not only were they moving themselves, but the immunology lab as well. Dr Klimas then had the more than full-time job of setting up INIM on top of her existing patient load. She stopped taking new patients then. Dr Rey also had new jobs, including training new staff, some of Dr Klimas' patient load and her own existing patient load to take care of. Neither one was likely to be taking on new patients at that point. :(

    Hopefully, things are starting to settle down. I think they'll be having another doctor soon, which should help.
    Valentijn likes this.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Buster

    And then there is Dr. Chia in California and Dr. De Meirleir in Reno.

    Sushi
    SOC likes this.
  12. @Buster
    I had a similar experience.
    I had been in contact with Elizabeth Balbin, the research director at UMiami last September and she told me that Dr. Vera would be coming to INIM soon and to try to see her (what @SOC suggested) and to get on the wait list if needed for Klimas or Rey. I was told by Yves at the front desk that there was no waiting list and that I just needed to keep calling indefinitely.

    I've left messages on the voicemail option and asked for a call back. I was hoping to learn what treatments they most commonly use (just to make sure they can offer something I haven't tried) and to learn how long the wait list is (so that I can make arrangements accordingly.)

    I'm still looking into other practitioners, but I'm having some trouble figuring out what treatments each doctor favors.
    I've already gone through extensive Lyme treatment and my PCP said that I couldn't have virus reactivation or autoimmune response because my IgM's are all negative.

    I hope that we have better luck than we have so far:)
  13. SOC

    SOC Moderator and Senior Member

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    @Buster
    Good news! Dr Vera is now taking patients. They're working through the waiting list. As of today, the wait should be 2-3 months.
    Valentijn likes this.
  14. Buster

    Buster

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    thanks SOC, i've made contact.
    SOC likes this.
  15. FernRhizome

    FernRhizome Senior Member

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    What is the best phone number to use in trying to get an appt with Dr. Vera? If I call the main number for new patients which is 954-262-2850 and hit x2 for new patients I just get a message machine. If I choose x1 for old patients I just get a message and/or get disconnected.
  16. Ema

    Ema Senior Member

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    Many people have re-activated viral infections with negative IgM levels. Typically they are only elevated in new, acute infections but most doctors don't understand this.

    Autoimmune issues are totally separate- you have to be tested for the specific antibodies. Most people start looking for an autoimmune issue with an ANA test, though it is not perfect.

    I hope you have better luck too!
    SOC likes this.
  17. SOC

    SOC Moderator and Senior Member

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    Yeah... sigh... that's the way it works at the moment. :rolleyes: Just keep calling and leaving a message on the new patients line. Persistence pays.
  18. SOC

    SOC Moderator and Senior Member

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    Don't rely on your PCP for anything about ME/CFS. Very few of them know anything about the illness and what they think they know is often wrong.

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