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Disappointing Dr.'s Visit


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i seen my cardiologist yesterday... after leaving my appt. i felt disappointed... i have never felt disappointed after leaving his office... not sure why people fly from all over the world to see him... anyway, when i have these episodes i write them down (memory isn't good)... and give him the paper, with the symptoms/episodes i had been having... he didn't even read my paper (he always has before)... i told him about the burning sensations i keep having, like someone hooked an IV to me and sent fire though it, etc., i have been telling him about these episodes for 8 years... he does not know what is causing this... i asked him if cleveland clinic may be beneficial, and he said if "no"... well, i think CC could be beneficial... don't you? if you don't know whats causing these symptoms, then shouldn't you send me to someone who can... i know CC does extensive testing, as my cardiologist does not... i am pretty sure there is a cause of my dysatuonomia... what would it hurt to rule out lyme, mitochondria, or whatever can cause systemic burning. .... or maybe there is no cause, and this is the best i will ever feel... i can not spend the rest of my life like this... i can handle the severe pain, nausea, headaches... it's the scary symptoms i don't like... like feeling weird/like a depersonalization feeling/light headedness, weak feeling in my body, and the systemic fire feeling... i have looked at past medical records where he says "i think another disease process is going on"... he seemed pretty tired yesterday, he yawned a few times, and stared at me several times without saying anything (talk about awkward silence), seemed like he was distracted... i feel like my appointments this past year or 2 have been a waste... i have seen a neurologist where an mri revealed several white matter lesions (frontal white matter), and i have had an emg that shows mild polyneuropathy... i seen a rheumatologist and he ordered lots of labs which show positive ANA and Histone and low vitamin d... with the brain lesions, mild polyneuropathy, and 3 positive ANA blood tests maybe there is a connection... i'm tired of going to dr.'s if they are just gonna waste my time... what can i do?

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Welcome to my world. I cannot tell you how much I have been disappointed. How many doctors I left and went and sobbed in my car... Nobody knew or yet knows what I have. I kind of gave up looking and have been happier. With your symptoms and findings I would really push your neuro doctor if anybody. Have they ever talked to you about MS? Do you have tingling or eye issues?

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Northerndarlene,

I am so sorry you are dealing with this. I know it is completely frustrating. Your experience sounds a lot like many of mine, and unfortunately quite similar to many others' I would hazard to guess. Know that you are not alone. Keep pushing and trying to find someone to help you. I know this is easier said than done.

I'm currently at a crossroads myself after being untreated for two years then getting semi-treatment for the last 2+ years. I am just now beginning to attempt to get back on the horse and begin searching yet again for someone to help me. I know it is so exhausting. It is bad enough to be taxed physically on a daily basis, but to then continue to get knocked down emotionally and mentally is tiring to say the least.

I wish you all the luck in finding answers. Try not to give up!! Keep on searching.

My sincerest hope is that you find answers and treatment soon :)

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I hear where you're coming from. The only good advice, I can give is to start with a specialist that deals with your worse symptoms. If they don't know what to do, then go see someone else. I know this gets expensive, especially if you don't have insurance or have to wait on a referral. If your gp doctor is blowing off the referrals, you may have to find a new one. Hang in there. I complained over six months to the doctors that my son could not sleep through the night. Finally found a medication that is helping. Now I've started picking their brain about why it is helping? This should be some kind of a clue to them about his health condition. Any time you are making progress and it continues, keep good notes and let the doctor know. Any health problems related to POTS seems to throw off doctors. Doctors are having to learn from their patients. I just wish there was a place, my son and I could go and live there for about a year and let them film everything we go through. Doctors would learn a lot and maybe not be so critical of our health conditions with POTS. Sorry for the rant. Hang in there and keep looking for a doctor that is compassionate about your case. The other thing that came to my mind, is maybe your doctor was just having a very bad day. It does happen, because when doctors get frustrated sometimes they do blow you off because they have tried everything that they can think off. I say this because our neurologist has tried all the medications that she knows of to make my son's tremors go away. If none of our next testing reveals anything, our next step is to get his tremors evaluated. It does sound like some of the testing you have had indicates something is going on. If I were you, I would keep seeking out a doctor that could figure it out for you.

Rachel

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So sorry that your doctor didn't seem to listen to you. :(

I always have high expectations heading into a doctors appt and then leave disappointed like I wasted my time (and money).

I've only been searching for answers for about a year and I'm totally frustrated, so I can't imagine how you must feel searching for even longer.

I agree a new neurologist sounds like a good place to start fresh.

Good luck and hugs to you.

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Hugs to you. Sorry about your experience. I can totally relate, as most here can. I was just talking to another DINET member about how I cried the whole way home from an appointment when told I didn't have a tumor.

As to further testing, at the very least it rules things out. At the best, you figure out what is wrong. As long as you have the time, money and perserverance you should keep trying.

Edited by corina
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I have had ZERO luck with mainstream doctors. I have have been to tens and tens of them to no avail. I find that they lack any inquisitiveness, and if they don't know what it is off the top of their head, they just shrug their shoulders. My best doctors have been holistic doctors (there are many who are M.D.s). They will do tons of tests and try to track down what is wrong.

Of course, the problem with them though is that a lot do not take insurance because insurance prohibits them from spending enough time with their patients.

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Sorry to hear about your experience.

I've been there many times, waiting months for appointments, with high hopes, only to come out disappointed. It is hard to find a doctor interested enough in this condition, and even if you find one, to come on his good day, when he is not tired or in a hurry. I know it can happen sometimes, doctors are human, too, but if you feel that lately he's not helping you, I agree with others, look for another doctor.

I am having a relapse now but it's not as scary as last year, when I got sick. I have doctors that listen to me, even though this condition is over their heads, they are trying to help and are not hesitant to write for tests or try new medications while I am waiting for Mayo appointment.

You need to find a doctor that will be interested in helping you. Don't give up on that. It is your life, you have to live with all the scary symptoms, not knowing what's going on.

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I'm sorry you are going through this. I am also experiencing the same thing. I saw the so-called best autonomic specialist in Canada and he didn't know what to do with me. My GP told me the same thing this morning. She told me I was a medical mystery, would most likely never find out the route cause of my autonomic dysfunction, that I should accept that fact and further testing was unwarranted. I feel like I exhausted all avenues in my country and might have to go abroad to get answers. I empathize. Hang in there!

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I have to say that I agree with "ask" on this one. I, myself am looking into a holistic dr. that is an MD. I've heard she spends tons of time during the first appt. to get a complete history (something I've found to be a rarity with the western dr.s, they seem to just concur with the original dx. and go no further. Maybe they don't want to step on toes??) then decides on what tests. True that many don't accept insurance, but from what I've hear and read, many of the tests are covered by insurance, so that helps.

Best of luck to you in finding a dr. that will listen and attempt to put the pieces of the puzzle together for you so that you may have some semblance of normalcy :)

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