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Thread: Frustrated with Doctors

  1. #1
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    Default Frustrated with Doctors

    I was reading the difficulties some of you had had with doctors and I feel it is unfortunate. I have been with my PCP 5 years now and both my doctor and his staff have been very empathetic and informative. Since I started to go through this scary diagnosis stage, everything has changed. I am now a nuisance...I can hear it in their voices when I call like “Oh its yooouuuu again”. Sometimes my calls don’t get returned etc… In my career I have dealt with the “persistent client” and yes they can get on your nerves but I always put myself in their shoes and try to empathize. I sometimes try to be cognizant of the fact that the doctors are very busy, and I don’t always call with concerns I try to research them first. I consider myself a smart woman but I am no Doctor and I just get sick of having to feel like I have to apologize for being sick.

    I still haven’t received a conclusive diagnosis for now they are calling it “undifferentiated connective tissue disorder". What bothers and frustrates me is that I don’t know everything that is going on until I request my records and read things that were brushed off and considered not to be a concern yet. I recently received my records from the Rheumy as I am seeking a 2nd opinion and found the following phrases which he never discussed with me: “ positive ANA 1:32 speckled” “elevated lymphocytes” “could be a lupus presentation” “antibody profile shows a positive SCL70”. When I read these things and try to discuss it with the rheumy I get the following… “it’s a mildly positive ANA not really indicative of anything to be concerned about” or “the antibodies just tell me it’s an undifferentiated connective tissue disorder”

    Maybe I should be satisfied with those answers and Just Suck It Up and stop being Whiny…but when I research them I get scared. I just feel like I can’t talk to my doctors and when I have thought about going to support groups I feel people will think I should stop whining it could be worse…as my PCP said “it’s not Cancer.” Believe me I will be getting another PCP and rheumy because regardless of whether I am right or not I feel I deserve a little more empathy than that. The problem is I am in limbo I can’t switch doctors because the insurance will not cover the 2nd opinion if I switch doctors mid -referral. So until February 9th I am stuck with them.

    I know I have a right to these answers and I hope I get them and I hope I eventually get the courage to go to a live support group. I like this one because if anyone ever thinks my questions and concerns are petty they only have Bugs Bunny in Drag as a face to the name. :lol:

    Thanks for taking time to read and listen to my fears.

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    SpanglishQueen...

    No one here would ever think your questions and concerns are petty...so worry not. Purge that thought. You are at a safe place...

    We don't suck up anything here...unless it is in a positive way to move us forward.

    Whining..nope. Your concerns are justified.

    Though we need a diagnose, want a diagnose, sometimes there just isn't enough information our bodies are giving them to give us one. The 4 of 11 Criteria. Blood work is just a part of the evidence for a diagnose to rule out other diseases.

    It can be a roller coaster ride getting a hard diagnose. For some it can take years, as symptoms arise. Some get an immediate diagnose.

    Have made all your symptoms known to your doctors...from eons ago. It is an accumulative disease. I m sure you read the ACR Criteria, eh? Would you like me to post them?

    I find many, many doctors, their staff have little bedside manners. Sometimes it seems they become business people instead of doctors. Many times they put their compassion in their pockets and forget there is a mental part to us.

    Are they treating your symptoms? They should be....

    One more thing, never apologize for being sick..okay...head hugs. I ask to be excused but I don't apologize. Sick is never intentional.

    Keep looking for your wellness.
    Love,
    Oluwa

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Spanglishqueen,

    I hate to break it to you, but I already see you as more than just Bugs Bunny in Drag! Your avatar is pretty funny. Doctors, unfortunately, seem to have the biggest ego's and superiority complexes of any people I've ever dealt with. I've known Senators and Generals who were not as full of themselves as most Dr.'s I've known.

    I have a rather in your face caustic attitude towards those in the healcare industry who treat me as though I'm a child. Like you, I consider myself somewhat intelligent, and I do not react well to those who would talk down to me. No, I am not a Dr., my education is in the area of mechanical engineering. But, Like you, I know how to read my own medical records and how to do some basic research. So, your Dr.'s now view you as a nuisance. Well, I say to your Dr.- TOUGH. Get over it, thats life, and that's part of the job. I've had my share of nuisance customers in my former career, but their nuisance status didn't change the fact that in many cases, they did indeed have legitimate grievances. And, Dr.'s seem to forget about the fact that THEY work for US. If an employee is not doing their job, and is not willing to remedy that situation, then they should be fired.

    So you do have some sort of positive ANA results. It would seem that this may fulfill some of the diagnostic critera for Lupus. I'd seek a second opinion and pursue this further. Thanks for letting me get up on the soapbox and listening to my semi rant/peptalk.

    Rob

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    Oluwa and Rob,

    You are wonderful :!: Thanks sooo much for making me feel comfortable. I am being treated for the symptoms I'm on Plaquenil, and I just read my records I have been on it since October...so 2 more months. The thing is I have more symptoms than when I first saw them but they aren't severe. My joints do hurt but its not excruciating, my fatigue is horrific somedays its soo bad I can feel the pain in my bones, low grade fevers come and go-today I looked like I ran a marathon due to the prespiration and all I did was sit at my desk, the brain fogs are horrible at times I stutter due to not remembering what I was saying (was bad for my old career -Attorney--I am in managment now (by choice) not too bad..but still stinks). My immune system is paper I have gotten every possible cold bug there is, in the summer I was getting rashes after sun exposure. So all in all I have off and on symptoms. The Fatigue is the worst and hopefully Plaquenil will kick in...I feel I'm on the right track and thanks to everyone on this site it feels a little more bearable.

    So hugs and kisses to all of you for the wonderful support and difference you have made in less than 24 hours.

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    bugs bunny in drag, that is an enjoyable picture.

    humor is a crucial weapon in the war we are in for our lives.

    welcome, i am glad you are here. We all support and never question each other. where else can you find this support? i havent' found it.

    share a smile today,

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    I have seen the same rheumy for almost 5 yrs. He first said I had UCTD and even went as far to say it was GOK - God only knows then laughed about it. I was really mad. I don't think being sick is funny. Well that was 2 months ago and finally today he actually wrote it was lupus. Drs don't know everything. Just remember they are "PRATICING MEDICINE" I have read that it takes the average lupus patient 4 to 5 yrs and 2 to 3 drs so your on the right track getting a new dr. I hope the days fly by until u can get a referal.
    Meds- Prednisone, plaquinel, carbatrol, lisinopril/htcz, citalopram, calcium, folic acid, flexeril, percocet prn

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    As a patient that doesn't have a firm dx yet I have to tell you that we pay the doctors office for them to see us. We help pay the salaries of the receptionists, nurses, pa's, and docs.

    My GI office was charging my insurance company over $300 a visit! They constantly mixed my charts up with another person with a simular name (both my first and last names are very common) they were rude and had an attitude "oh it is you again". I was getting no where so I fired them. (I cancled my regular check up appointment and never went back).

    If you don't feel like your getting the correct answers then seek someone out that will give you better answers. I was always told my cbc and blood was fine when in fact my wbc was elevated along with my crp and another one. They have been out of whack for over a year before I found out. I also found out someother intresting stuff they new about that could be part of my problem. ( a foreign object left behind from my gallbladder removal three years ago).

    Anyways if your uncomfortable about your doctor find someone you are it could be life or death in some cases.

    RedHairAngel

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    Well...

    You don't sound whiney, you sound like someone who is taking responsibility for her health care. Unfortunatly, you also sound like someone who feels like she is not being taken seriously. This is a good sign that you need a second opinion and to be a little more aggressive. Since it appears it will take a while for you to get your second opinion, now is a good time for you to start calling around to obtain a copy of all of your medical records. (All the way down to ER visits)

    If you feel that the issue is a resolvable communication problem, but otherwise you recieve good care, then try to resolve the communication problem first but still get all of your records and review them yourself. This will help you to feel more in control of your medical situation. Do not be surprised if you find a lot of minor errors on your records.

    You sound like a smart lady - once you get your records, spend time going through them and outline everything on no more than two pages. If you go into the doctors office with a stack of medical records and hand them to the doctor, you're likely to get a blank stare in return.

    Keep your records in some kind of sequential order by work up (cardiology, urology, and then by date etc) Put some sticky notes or tabs on the pages so that when you're going over the two page outline with your doctor you you can refer to any relevant laboratory back up, pictures etc. Do not give your doctor your original copies of your records. You will not be happy if you have to repeat the medical record gathering process a second time

    Sometimes too much information at one time can hurt you more than help and the more organized you are, the greater your chances are of not falling through the cracks. Many medical professionals see too many patients during the day and its very easy for all of them to get mixed up in their heads.

    Do not feel bad about this. Regardless of whether or not your illness is mild, you are paying your medical professional to give you advice and care appropriate to your situation - this includes answering your questions. How can you learn if you do not ask questions?

    There are some things you can do though so that your appointment is smoother one of those things is to create an outline of what is bringing you to see the doctor. (Since it sounds like your doctor is needed for chronic illness an outline may be the best format.

    You may need to adjust your little outline for your particular problems but the point is, keep it simple and relevant. Review your outline several times before you see the doctor and a final time before your appointment.

    1. Summary of why you're there to see the doctor. Keep this short and sweet but make sure you cover all points that are important to you. Include how your symptoms effect your quality of life, when you noticed their onset and any patterns.
    2. Medications
    3. Significant events (surgeries, major infections, hospitalizations, diagnosis, congenital defects etc) Keep these bullet point one liners with approximal year and/or year and month. You can always elaborate with the doctor or refer to med records as needed.
    4. CT Scan / MRI / Ultrasound clinical impressions (etc) and with a date stamp. Bullet points!! Include any impressions whether or not you think its relevant. You can always elaborate with the doctor or refer to med records as needed.
    5. If your symptoms are remitting/relapsing - recount as best as you can a full "cycle" worth of symptoms. keep this as bullet pointed as possible. It helps to carry a little calendar with you and write down the course of your symptoms. If you went to the doctor during these times - what were the vitals / UA results etc)
    If you have joint swelling, edema, rashes etc during this period of time- take pictures. Include them with your two page outline if needed.
    Do be sure to include any mental problems you may be having during these times as they're very relevant to many different types of chronic illnesses.

    Do not forget that lifestyle habits are just as important as your lab reports.

    Keep a copy of your outline for yourself to refer to so that if there are areas you want to elaborate on during some point of your visit. On your copy also include your questions ahead of time.
    Your doctor will most likely ask you specific questions and not want to look at your outline immediatly and that is ok. You use your outline whenever he/she is done questioning you.

    Keep in mind that online medical information will be written so that no one gets sued should a hangnail actually be cancer that takes over in 24 hours Use multiple sources when doing online research if you're going to do it and more importantly, don't be afraid to use your own logic and intuition.

    Sorry the post is so long. Usually I'm the chick with ADD

  9. #9
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Justomegirlindallas,

    Wow, thank you for posting such an extensive, and practical list
    filled with excellent advice. I'm not new to Lupus and Dr. difficulties
    subject, but there are a couple of suggestions in your post that I've
    never thought of, and could certainly help me, as well as many
    others. Well done.

    Rob
    Moderator

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    it is because of the lack of treatment from my doctors that prompted me to get my medical records and I found out I have either a needle or clamp left behind from my gallbladder surgery I know this because I got my medical records from the last 20 years from all my doctors so I could get a dx and try and prove that it isn't all in my head I am not crazey that there is something wrong and there is something wrong it just been over looked.!!! I have a dozen radiologist reports that state the foreign object hasn't moved since previous exams no one told me till I read these reports myself!

    I also got on the internet and went through my blood tests for the last three years my CRP and white blood count and another test I forgot the name of was elevated. and when I showed this stuff to my PCP who had never gotten any of these reports from my GI he was shocked. I am having a CT contrast scan on THursday they are doing a full body scan to see what kind of damage I have from my immune system because of my blood #'s are still whacky and to try and pin point what kind of foriegn object was left behind and where and whether or not it needs to come out.

    I have been through hell and back emotionally, I get a dx then the doc took that away, I have been told I am crazy, it is all in my head. I have taken heavy duty drugs for Crohn's and turns out I don't have it?! but yet I have most of the symptoms of it or an immune disorder. I am tired I want to give up but I can't not till I prove to these morons I am not crazy.


    RedHairAngel

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