Physician Abuse or Burgeoning Systematic Disposal?

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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Physician Abuse or Burgeoning Systematic Disposal?

Postby carole » Thu Jul 27, 2006 10:04 am

I am wondering if my last recourse has been expended. Wednesday I visited a physician (an internal medicine practitioner) in hope of a diagnosis -- at the very least a referral to someone who’s expertise might be helpful. With me I took a briefly detailed but thoroughly relevant synopsis, also detailing compliance with clusters of ineffective-to-worse draconian prescribed. There is little chance IMO a preliminary diagnosis of foot & leg LE -- both its inherited form and that compounded by trauma, owing to facts of my own, and that of a disabled parent (whose ultimately also exhibited every commonly known trait of advanced class III, including -- despite all vigilance -- acute bacterial lymphangitis WITH near fatal bouts of septicemia), might have been anything less than appropriate: in addition to a litany of other symptoms, with entire-foot involvement, I cannot wear the best therapeutic shoe more than a period of 3 - 4 hours if at all, nor can I at present hold a job. Pain is chronic, often acute, and mobility consequently impaired due to weight bearing limb involvement (chronic since 1981, when, during diagnosis for DVT, I became the subject of a venogram procedure malfunction; moderate walking produces consequences of profound and excruciating swelling with concomitant interdependent bilateral pain. During the visit, and while having no problem diagnosing peripheral neuropathy, this physician would not, despite repeated request, consent to an order for diagnostic Lymphoscintigraphy -- nor would she, as with previous others over decades, including vascular specialists, agree to written diagnoses now or anytime hence (following frequent Ultrasound tests) for other than Chronic Veinous Insufficiency. I made a point of tactfully emphasizing stated terms of my CIGNA insurance emphatically read, for MLD qualification, “confirmed diagnosis of intractable lymphedema” at all times required ... Response to this was threefold: first, a suggestion that I arrange any MLD therapy “on my own“, secondly was recommendation for arterial pulse diagnostics (this being the popular “CYA factor“, with which I will have no issue), and third, written referral for therapeutic counseling! As I rack up yet another co-pay liability (not counting diagnostics), odd that she didn’t mention the latter until taking note of prescribed antidepressant from the referring GP. All things considered, does anyone have insight into WHY such resistance to provide, in the absence of written diagnosis, a simple referral that might allow patients a modicum of dignity through possibly obtaining one elsewhere? If “too busy” is far overused, does this not approach quite utterly reckless delivery of service (?), and, regardless, how does one hope to mitigate whatsoever one’s circumstance when a physician will show contempt??

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Joined: Tue Jul 18, 2006 12:24 pm
Location: western MD -- Hagerstown area

Postby joanne johnson » Thu Jul 27, 2006 12:31 pm

Hi Carole,

After reading your post I can see that you are right on top of things. The problem with most doctors is that they are just plain ignorant about lymphedema. They know very little about it, don't care to learn about it and don't want to be the first to take any positive action and go out on a limb for you. I have had lymph in both of my legs for 25 years. Initially, my internist thought it was vascular insuffiency for a long time. He finally sent me to a very good vascular surgeon who knew what it was immediately. A second vascular also agreed. Fighting the ins. co. is something most of us has experienced. It turns into a war!

You really need to get to a really good vascular doctor to see if he can and is willing to help you. Good luck! Let us know how you make out.
joanne johnson
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Joined: Sat Jun 10, 2006 12:23 am

Postby Seattle Gal » Fri Jul 28, 2006 12:26 pm

Hi Carole,

You really seem to have worked hard to get yourself some help. One suggestion that might help get to a physician willing to help you and advocate for you. Is there a PT clinic in your area that offers the MLD by trained PT's? If so I would call and talk to the therapist and see if they would be willing to share which physicians have sent patients to them and been willing to work with them. I think this is information that they would be able to provide you without violating any patient's HIPPA rights. Also you might try a hospital PT department that does MLD for breast cancer patients. All would be more familiar with the condition and know which physicians are knowledgeable. It is very frustrating to run into physicians who know little of the condition and won't admit that and then seek other expert help for their patients

A vascular surgeon is a good place to start. My PCP simply called a vascualr surgeon she knew and described my symptoms and he told her lymphedema without even seeing me. So set her on the right track to help me.

Seattle Gal
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Joined: Mon Jun 12, 2006 12:15 pm

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