I've Got To Stop Going To Doctors!

[firewatcher]

It's bi-annual doctor season for me. I went to my neurologist and he wants to send me to a EP to get an implantable loop recorder, he's talking about ablation and a pacemaker! Then I go see my OB-GYN. He asks about my health and what my docs are doing about my high hematocrit and increased stroke risk due to plasma volume deficit. I could only answer, "nothing." Then I tell him about my Chronic Kidney Disease and he asks why nobody is doing anything about it. All I could do was shrug. I felt like an idiot. We finish talking and he tells me that I should definitely stay married since I am "completely uninsurable."

Why do I bother?

[sue1234]

I totally get you! Your gyn sounds like mine at my last year visit. That was my first visit to her, and after I gave her a quick synopsis of what my health was like, she asked what the doctors were doing for me. I told her, so far, not much. A couple of times after that, she kept saying, "you shouldn't have to live like that!". I totally love her concern, as no POTS doctor has that concern. I need to find her genuine caring concern for me, as a patient, in a doctor that can actually address my POTS symptoms. She did send me to a neuro, and he was nice, but clueless. I did learn that I have some neuro abnormalities and cervical stenosis. But, alas, couldn't answer if he thought that was contributing. Neither could the next neuro.

I have been spending the year hitting up any specialists that might help me rule out various possibilities. I've had a few good ones help rule things out. But, like you, I am tired of it. The cardiologist has to be the worst, and he should be the one to do SOMETHING.

I don't know if you saw my post last week, but after doing labwork fasting, I seem to have a high in-range hematocrit, hemoglobin, and RBC. I know a long time ago, way before POTS, my hematocrit was above range, in the low 50s. My doctor acted like it was nothing, and just said I needed to donate blood. I didn't think anything of it back then. So, why are we like this? This is the million dollar question!

[HopeSprings]

UGH, I KNOW. It's ridiculous. We're just in the unfortunate position of being stuck with a disease (disorder,syndrome-whatever) that hasn't been figured out yet. What did all the M.S. people or Lupus people or whatever disease people do before their disease had a name, a known cause, a treatment, or cure? I keep telling myself I'm just going to have to wait for science to catch up and then I find myself at the next frustrating Dr's appointment. It's hard not to seek out answers - as annoying as it is!

[Lovebug]

Hi All,

I can relate. That's why I tell everyone about Dysautonomia every chance I get. I don't care if I bore them or they don't really want to hear it. I do it for awareness. Even people I hardly know. I just want everyone to know that it is REAL and it is miserable. I'm lucky in the sense that my doctor completely understands and that I'm a nurse so most people take what I say seriously. It is still so frustrating but you can only do what you can do.

I hope everyone feels better!

[Guest maia]

Oh i hear ya! Its like banging your head against the proverbial wall isnt it. One doc says omg why isnt the other doing something, then when you nention it to the next doc they dont want to hear it because it came from you and what do you know... and when you show studies or other validation for the reasoning they say well lets try this firs...even if its completely unrelated...then there is the old-well you know it could just be stress-or the even better-why dont you try this antidepressant for the ... palpitations, light headedness, shortness of breath-because you know those are all just symptoms of anxiety...oh and then there is the wonderful 'hmmm, why dont you come back in 3 months and we will see how things are then'....AAAARRghhhhh!

and ps. please excuse my rambling and lack of punctuation. I am so happy to find this site and have about two years(or 10 depending on whether this was an issue long ago also) of pent up rage that has hand no where to vent... my writing will improve as the anger subsides, lol...

Blessings all around ladies!!! we will get this figured out one way or another!

[Tachy Phlegming]

Happily your writing is pretty decent now. If it declines with hearing things which don't make sense and your subsequent anger, it still may actually deteriorate quite a bit. Sorry if you were dreaming of perfect writing for having heard one logical tidbit in a sea of nonsense.

Edited September 19, 2011 by corina
removed quoting

[Guest maia]

LOL

[sandymbme]

I count my lucky stars every day that I stumbled upon a great primary care doc, who really treats me as aggressively as possible, and demands that specialists do something for me. That being said, though, it really took two more diagnoses of things doctors had at least a little more familiarity with before I could get anyone aside from her and my home health nurse (who sees me twice a week, so knows better than most how sick I really am!) to take me seriously. I just kept getting sicker and sicker, with all these ER interns telling me I was exaggerating my pain, and there was no reason for my recurrent, incurable diarrhea. I can't tell you how relieved I was to be diagnosed with two more incurable chronic illnesses, how sad is that! But I was finally, finally "legitimately" ill, and no one could argue that I was inventing things for attention, or exaggerating symptoms for the sake of getting pain meds. I know how hard it is, but you really can't stop going to doctors, sadly. It was truly annoying to me that one of the rudest, most disagreeable docs I have ever dealt with finally dx'd my Celiac Disease. But if I hadn't sucked it up and followed up with her, who knows if I would still be here at all, I was losing so much weight towards the end. And my pain management docs were absolutely astounded that my EDS didn't get dx'd until I was 35, they had no idea how I managed to live with the pain all these years. The validation was so sweet, it made the suffering just a bit more bearable. With better dx's, I truly hope that my health can finally stabilize. So hang in there!

Sandy