I could not believe what that nurse told my doctor! (long)

Discussion in 'Fibromyalgia Main Forum' started by Seagull, Feb 19, 2003.

  1. Seagull

    Seagull New Member

    I may have mentioned in earlier posts that I have been diagnosed as having Meniere's Disease, which, for me, means constant loud tinnitus in my right ear, and, often, violent spinning vertigo attacks that are accompanied by severe nausea and equally violent vomitting. These attacks last for hours, sometimes into the next day, and leave me in even more all-over pain from the muscle spasms brought on by the vomitting. I have to tell you, they are very scary to go through and leave me in pain and exhausted for days afterward.

    Anyway, after the first attack, I immediately sought help from my PCP. The earliest appointment was not for a couple of weeks. When I got there, though, he was out sick, but the fill-in doctor said it was Meniere's and ordered an urgent referral from the insurance (it's an HMO) to send me to a neuro for further treatment. (Amazingly, the HMO approved the referral that same day.) By this point, I had had 6 of these violent attacks. So, I spoke with the neuro's nurse the next day and she told me that they could not get me in until the very end of March. Having suffered through some 6 of these attacks in the previous 2 weeks, I expressed the concern that maybe an earlier appointment would be better, because this thing had pretty well taken over my life. She told me to call my pcp and ask him to call the neuro personally and they might be able to get me in sooner.

    Well, for the next few days, I tried to get this phonecall coordinated between my pcp and the neuro. Nothing happened. I left messages for my pcp, but they were never given to him. I expressed my disappointment to the pcp's nurse and asked for her help in getting this accomplished. I also called and spoke with the office manager about the same thing. I described the attacks to both of them. Again, I did this on the advice of the neuro's nurse who told me it would help get a quicker appointment. Well, no one called, so the thing fell through and I am left with the March 31 appointment. Never once did I get rude or angry, although I was scared and upset by what the frequent attacks were doing to me. In fact, I had to go in to see the same fill-in doctor 2 more times for some kind of help with the next couple of attacks -- he was filling in for my pcp who was still out sick, so I did not have an appointment. I just showed up and was worked in to see the fill-in. He added Lasix to help with the fluid buildup in my ear, but that was all he could do.

    Anyway, today, 3 weeks after the start of all this, I went on my scheduled pcp visit. My pcp was there and he looked in my file and told me that he could not see me as a patient any more, because I had gotten demanding with the staff about getting in to see the neuro sooner.

    I could tell that the two staff I had talked with did not tell him the whole story, so I told him everything that had happened and that the only reason I even asked them to ask the doctor to call the neuro was because I had been told to do so by the neuro's nurse. I told him that obviously they had not described the full extent of these attacks and that I had had 8 violent episodes within the last 3 weeks. What else was I supposed to do? Thank heaven I was able to give him exact dates, times, and descriptions of the attacks from my journal (which I am glad I took with me).

    Well, I am glad to say that he was horrified by what I told him I had been through with those attacks and he was not told how serious they had been. He told me to forget what he said about not being my doctor any more and then promptly prescribed an increased dose of the Lasix and added a new prescrip for Valium (which, I found out, is a common med used to help reduce the frequency and intensity of the attacks). He also made a follow-up appointment for me in 2 weeks to see him and said that the Meniere's would certainly make my FM and CMP even worse during and after the attacks, so he was glad that I had the massage therapy to use for that. He did say to have the therapist avoid the upper right side of the neck, jaw, and ear area until the neuro finished his exam of me, in order to hopefully avoid stirring things up. I got the impression that he was also going to inform his staff to listen better to a patient who came in with these symptoms in the future.

    Anyway, everything is okay with our doctor-patient relationship and I am so glad. We even got a chance to discuss the SSD paperwork I am dealing with. He fully backs me up on that. He told me that he clearly remembers all the times I came in to see him to get help for all-over pain, between 1993 and 1998 (before I was officially diagnosed with these DDs) and offered to do a supplemental letter to the SS for me stating all this. It seems that Kaiser had lost my records from that time period when they left Texas, so the SS did not receive them. Anyway, he is going to do a detailed letter and give it to me to send with my appeal. So, here's hoping everything works out.

    Now, I just have to get through the next few weeks, waiting to see the neuro about treatment for this Meniere's. I hope they get it under some control because it is greatly increasing my pain from FM and CMP.

    Sorry for the length of this post, but I really needed to vent!
  2. dhcpolwnk

    dhcpolwnk New Member

    I would say I empathize with what you're going through, but although I am having problems getting appropriate care, too, it's nowhere near as severe as your situation! I just wanted to extend some encouragement. I'm sure you know that you'll get a lot of support from this group. I hope the neuro you see is a good one--one who knows how to *listen* as well as how to prescribe, refer, etc. My best wishes are with you.

    --Laura R.M.

    P.S. Obviously, your first priority is getting the care you need, but after things seem to settle down, I urge you to complain to your HMO and/or to the agency that oversees HMOs where your state. Nothing will change unless those in charge know plan enrollees are having problems. Not that a complaint to the HMO itself automatically will change things, but at least here in California, we have a good oversight agency, the Dept. of Managed Health Care, which looks for patterns in complaints and has the power to impose fines, etc., if particular plans consistently fail to meet the needs of their patients. However, you do have to go through your own plan's grievance or appeals process first.

    [This Message was Edited on 02/19/2003]
  3. philsr

    philsr New Member

    I have decided that some docters and most of their Office help(and probably some nurses) have just lost their feelings about their fellow man and it is a shame that we are treated like nobodies. It is a shame that they think everyone is just whining and they will be OK.

    I did say some Madwolf.LOL
  4. Seagull

    Seagull New Member

    and for the suggestion. I think I will call the insurance about those 2 staffers once I get to the neuro. If my doctor had not believed me, I would have been left with no doctor. I was surprised to learn that the doctor does not always have a choice of who his/her nurse or other office staff will be.
  5. gumama

    gumama New Member

    I am so sorry you had such an experience... sometimes I wish we could take these Dr's and put them in our positions for just one hour.. they would be screaming for help.

    I had my first Meniere's attack 2 yrs ago fortunatly for me I was at my daughters house who also has Meniere's and knew what it was... my attack lasted 3 days.. I ended up in ER for 8 hours.. however I have learned that salt,sugar,chocolate and STRESS are big triggers for me.. with the Fibro we don't get a lot of sleep and this just ads to the problem.

    I take 2 mgs of Valium in the morning and at night.. I also found that taking my Calcium at night also helps me sleep.

    I hope this info is helpful to you.

  6. aryiella

    aryiella New Member

    Luckily I have not been in as severe a situation as you were but I can totally relate with getting the run-around with Dr's. I have an HMO too where I have to go thru my PCP. I've had to make numerous calls/faxes to them over the past year (that's when their phone wasn't busy). First of all, it seems like every Dr's office has way too many patients these days. Then if you want to see a specialist, expect to wait at least 2 months. Then, after you actually get to see the specialist, and they run tests, be prepared to wait at least another 1-2 months for a follow-up appt. to find out the results. THEN, if those tests come back normal, go thru the whole referral process again with your PCP so you can see another type of specialist, and be prepared to wait some more. Do these Dr's not realize that every day that goes by where we do not get help feels like an eternity when you have this fatigue???? Don't they realize how incredibly HARD it is to drag yourself out of bed every damn day, wondering how much longer you're even going to be able to work full-time and take care of yourself??? Right now I'm waiting on an appt. with a 3nd specialist on 2/25 at a sleep clinic, after starting this journey seeking help this past summer. I've already been to see 2 different endos(first one I didn't like). Sorry, I had to vent too...

    [This Message was Edited on 02/19/2003]
  7. Seagull

    Seagull New Member

    Sandy -- my research did show that avoiding the salt, sugar, chocolate, and caffeine can help. So, I am doing that. But, stress is something I cannot seem to avoid. I do have the sleep problem often enough, even with the ZMA, that I know needs more help. Does the Valium seem to help you sleep? Can you function on it during the day? Does anyone here take both ZMA and Valium for sleep?

    Holly -- your observations have just reminded me that my pcp's staff never called with my last lab results. The lab was done the 3rd week of January! I did call for the results the following week, but was never called back. I forgot to ask my pcp when I saw him today. Guess I will have to wait til I see him again in 2 weeks.
  8. Seagull

    Seagull New Member

    I will keep him in mind. My pcp referred me to Kevin Connor, a neuro in Arlington who does deal with Meniere's in many of his patients. But, if he cannot make some headway on successfully treating and controling it, I know my pcp will want to send me for a second opinion, so I will remember to mention Philip Anthony to him. :)
  9. patchwork

    patchwork New Member

    Hi There, sorry to here about all your problems. I'm sure once you get on proper meds for the Menieres you will rarely have an attack. But please make sure you take someone with you to the appointment as to make a diagnosis of Menieres they usually fill your ears with fluid and tilt you. It's not a nice experience, but worth it in the end! Maybe they won't do this, but just in case!
    Good luck, Janicexxx
  10. Peace7

    Peace7 New Member

    Asking to be put on a cancellation list?

    Some doctors keep a list of patients to call when they get a cancellation. Some don't keep such a list. In that case, I would call them every 3 or 4 days and ask them if they have had any cancellations.

    Hope you're feeling better soon

  11. LauraLea

    LauraLea New Member

    you were able to keep calm about this whole thing. I don't think I could have.

    I had a simular sysmptoms (but mild compared to you) and it is very scary. I don't know what I would have done in your place.

    You are a hero to be able to keep your cool and to have gotten the results that you did. It's great that your doctor took the time to listen to you. He sounds like a keeper.

    Way to go, but sorry you had to go through it.

    Great story..
  12. bamboo

    bamboo New Member

    i don't have meniere's. i have had awful experiences with the health care system and i just wanted to add to all of the support you're getting here. it is ironic that we have to use what energy we have to fight to get the care we need. there is such a need for patient advocates. i hope you are, indeed, able to take someone with you to appointments. although i haven't any more of the great practical advice that you are receiving here, i just wanted to let you know that one more person cares and supports you through this maze. i admire your tenacity, persistence, and spunk. hang in there. keep us all posted.
  13. sofy

    sofy New Member

    I have found what works for me when wanting to communicate directly with my md. I write a very short polite direct to the point letter. It has to go in your file and then there is no garbled interpertation as in goes thru several people. You cant do this often (remember the wolf story) but when the message is important and needs attention now, as your situation, it get the job done. I usually get a call in less than 3 days from the office.
  14. ephemera

    ephemera New Member

    Hasn't it gotten to the point where we all need to be like mad dogs to get information about our own bodies?

    I hate to get into the he said/she said round-about with office staff, nurses & docs. We all need to see so many doctors & specialists, & they all have different affiliations, procedures & policies. That's on top of all the insurance differences.

    Three weeks ago I called my rheumy for a prescription renewal. The office told me they could not fax my request to Medco because "we can't be faxing all day long." They promised to mail me the prescription (hasn't shown up yet), & they would only call the local chain drug store (which will cost me much more than Medco).

    In my head I visualized one fax to Medco that was a batch of patient's prescriptions. One fax, not her standing there sending through each separately; or maybe sending each separately with the repeat button programed to do all the work. How hard could this be? Couldn't it be done, say in the AM & PM?

    Fortunately my PCP's office is terrific. They allow email requests for prescription refills, etc. I also email the office to update my doc when I don't see him regularly.
    That way it's in writing. For nearly 12 years I've gone 25 miles out of my way for this physician & he's gone the extra mile for me in advocating for earlier appointments with specialists. When a physician picks up the phone & calls another, that says something.

    It's hard to find a really good doc, but when you do it makes all the difference. Ask your doctor for an email address (for the office not a personal address) & if the office has a website.

    Best thoughts.
  15. Seagull

    Seagull New Member

    Janice -- yes, my pcp has put me on 2 mg 3x per day of Diazipam (Valium) (to help with the vertigo spinning), along with 40 mg daily of Lasix (to lessen the fluid buildup in my right ear) and 75 mg daily of Dipyridamole (to keep my blood flowing freely in those arteries of the neck). He also told me to keep on the low-sodium eating plan which I had already begun a week ago. So far, so good. The vertigo I have had during the last couple of days did not progress to the violent stages as previously. I was spinning, though much more lightly, and had nausea, but no vomitting. I consider that a huge improvement. I do make sure that I have someone with me at each doctor's appointment and I am not looking forward to those tests, but know that they must be done.

    Lane -- I was in a car crash some 11 years ago and suffered severe concussion and whiplash injuries. My mid-upper spine was also badly twisted. My whole upper body was slammed into the car door and frame (I was driving) and that doorhandle permanently damaged my left hip joint. The doctors have concluded that the injuries damaged my central nervous system, as well as my whole upper torso, neck, shoulders, back, arms, hands, hip and pelvis, and legs. They also believe that I received some neuro injury, too, all of which led to my developing the FM, CMP, bilateral carpal tunnel, and now Meniere's. They have told me that some symptoms and conditions can take time before showing up, so they are not surprised that the Meniere's is only now coming to light. Before that crash, I was an active healthy person who lived and loved life to the fullest. Oh, if we could only turn back time.

    Anne -- yes, the neuro's office has me on a cancellation call list, but that nurse told me not to be too hopeful about getting called, because he stays booked for months in advance and usually people who wait that long do not cancel their appointments. I actually was given an unusually quick appointment time (March 31), considering all that, I suppose. I guess it would not hurt to check in with her on a weekly basis though, just to see. I'll plan on doing that tomorrow. Thanks for the suggestion.

    Laura -- I am very lucky that my husband happened to be home during each of the violent attacks. At least 3 of them happened in the middle of the night, so when I screamed for him (of course he was in bed with me, but sound asleep), he was right there to hang onto me, or I would have been thrown all over that room. He had to half-carry me into the bathroom when the nausea brought the vomitting, and had to hold me up or I would have passed out from it. Lucky for me, he is a former body-builder, so has the upper body strength needed to hold on to me. The rest of the attacks happened after he got home from work, in the early-mid afternoon, so again he was there to help me get through them. I am fortunate to have the pcp I have, because he does listen to everything I tell him. And, of course, my vital signs and physical appearance certainly show him the proof of what I am saying. It was only because he had been out sick himself, why he did not know the full details. But, thank heaven, he listened to me and put a stop to that nonsense the 2 staffers were saying.

    bamboo -- I never thought I was being "spunky". :) I just wasn't in the mood to take it anymore, so was determined to make someone listen to the truth and it happened to be the right someone. I am glad for that. And, thank you for your kind words and support.

    sofy -- I will keep that in mind for any future problems of this sort. They threw away the phone messages I left for him, but maybe they would have to keep a letter. Hmmm. It is certainly worth a try.

    ephemera -- you have given me a lot to consider and look into. Thank you. Fortunately, the particular staffer who was the main problem already has a reputation for being a hardnose and difficult to work with, so that helped. I will check into whether they have an office email that patients can use.

    Thanks, again, everyone, for all the kind words of support. Have a soft day. :)
  16. Seagull

    Seagull New Member

    I did not think about accupuncture, but will look into that treatment. I remember my father used to go all the time for his headaches and he did find relief with the accupuncture from them. I just never thought about using it for Meniere's.

    I have used ginger in the past when I would have an upset stomach, but did not know it was recommended for the symptoms of Meniere's. I will look into that, also. Thank you for the suggestions. :)
  17. pearls

    pearls New Member

    One time I visited the walk-in night clinic of a former doctor. Twice before I had left him because of his unconsiderate staff! I was desperate, though, with an infection, and in a situation where I could not see my latest (at the time) doctor for two months. Anyway, I had been calling all day to the clinic only to get busy signals.

    When I arrived at the clinic during their walk-in hours, I overheard a man complain about the busy signals. The receptionist replied that they were short-handed that day so they were not anwering the phones!

    I call that triage by phone - and by non-medical personnel!! What if someone had been in a really serious situation?!