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I'm going out on a limb to get the help I need and can't get from my clinic == comments?

aliceanne
10/08/08
aliceanne
Topics:Advice

I've suffered increasingly severe symptoms of a suspected allergy to latex (and, apparently, other substances at work).  When I was fortunate enough to have ins. and a private doctor, I was given a prescription for prednisone to treat severe latex allergy (he was going on what I told him on the phone; and the prednisone successfully reversed my reaction); on an earlier occasion, I wentto a clinic in full-blown allergic mode (periorbital edema, scarlet rash and facial blisters) and was given a cortisone injection with a supply of benadryl to take home.

 

Why is it so difficult for me at the present time (being seen at a teaching hosp. general clinic and have no ins) to convince these doctors that my (very obvious) symptoms are allergy-based?  Why haven't they treated me, as opposed to testing me for everything else, with no diagnosis after weeks of visits and tests (the first health care specialist == a nurse practitioner who saw me decided that my acne-like lesions (more like eosinophilia, in my humble opinion), anxiety (I refused to have my BP taken until I was assured that the BP cuff contained no latex), and low (but not unhealthy) body weight were symptoms of drug abuse and insisted on a drug screen, which precluded and delayed my true diagnosis,  The second professional, a doctor, diagnosed "severe anxiety" and, on seeing a drug screen result negative for everything except the diazepam(valium) for which I have a prescription, suggested I try an anti-anxiety med, clonazipam (or something like that) because valium is not for anxiety(what?) -- first, you say I'm a druggie, and now you want to turn me into a zombie (I know someone who's taking clonazipam for some mental disorder or other and, even on a low dose, he sleeps all the time, and exhibits zombie-like behavior when awake == not my style).  It's not an option for me to go to bed for a week  -- the above-mentioned patient is on disability.  I have to work for a living, and I am a part-time student.  The half a 5 mg. valium I take 2 - 3 x a week will either make me drowsy or seriously relax me, depending on my level of anxiety, so why would I want to try something new and more potent?  I'm already dealing with some sleepiness/dizziness from fexofenadine (60 mg) prescribed at clinic, and I cannot take time outs to try this or that anti anxiety drug when I have one that works fine when I need it.  I feel that I need to be dealing with my issues, not avoiding them, unless I'm upset over my increasing allergy symptoms which are yet to be addressed by clinic doctor.  I had a prescription for valium but did not use it until this refusal to diagnose/refusal to treat/refusal to speak to me as an adult who deserves honesty and respect from these people.  Yes, I'm anxious:  I'm concerned with the effects that the chronic inflammation (my symptoms have not abated entirely for two going on three months now) is doing to every cell and organ in my body, while these morons take their time "playing" me.  Is it time to see a new set of "professionals" at another clinic?  I thought about presenting with one symptom only, that of long-term arthritis pain in one hip, and this might get me the cortisone injection I need in order to give my body a break from chronic inflammation, constant fluxuation in symptom severity, and potentially end the damage that is occurring in my body (skin, lungs, possibly heart, kidneys, liver -- some of the prelim/incomplete testing -- how irresponsible! has indicated some elevations in some enzymes, extremely elevated WBC count (they claim a differential was not performed and the test had to be re-done == do you believe this?).  Without going on and on with every single detail, believe me when I say I've studied medicine and over the last four weeks, have researched everything I could find on latex allergy, effects of untreated Type I allergy on each body organ, immunology in general, and now the subject of eosinophilia (which the doctor would neither confirm nor deny; he said there had been no differential count, which is part of every CBC -- am I right?).  So, what if I'm right, and I have no reason to believe otherwise; I'm also not a hypochondriac, have (or had) a full, interesting, challenging life, so I don't need any drama; I've done well in all of my studies so I'm not just doing "Cosmo" health quizzes -- I've been a dedicated researcher in my own case study because no one else will listen, nor entertain the idea that my symptoms, untreated, have created havoc.  I have witnesses (co-workers) who have observed me as the symptoms went from none to severe over the course of two or three days' exposure to the suspected allergens.  Let me point out that this is not an acute set of symptoms.  I've had increasingly more severe reactions to latex over a period of 10-12 years, and, as stated above, did not have to be tested to be treated in the past.  Are they going to test me if I go into anaphylactic shock, or will they treat the symptoms -- I would like to know, seriously, if they are this clueless.  Time for me to quit playing with these morons.  I've already waited too long, and the arthritic hip is for real.  The potential damage to my entire body and my future is far more serious than the risks (nonspecified) posed by cortisone/prednisone in therapeutic doses for short-term treatment of the symptoms I've mentioned.  What are these people afraid of (one of them told me he "would be risking" his medical license by treating me with cortisone!  What about refusing to do anything while my symptoms keep on coming back, each time more severe?  Doesn't "history" qualify any more?  )  The answer to all of this  is that I'm barking up the wrong tree if I expect help!

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Answers (2)
Romelia Walters
Romelia Walters
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Asthma Educator and Asthma Allies Co-Founder

Romelia Rodriguez Walters, AE Co-founder, Asthma...

Sunday, October 19, 2008

Hi Alice Anne,

 

We receive many calls at Asthma Allies with similar concerns to yours.  Parents feel that their children's doctor is not listening to them when it comes to the lack of control of asthma symptoms; adults feeling that they they are not being taken seriously about their disease; and people just plain dissatisfied with the quality of care they are receiving from their healthcare providers.  I always give a two-prong answer to their concerns that I will share with you:  educate yourself about your (or your child's) disease and advocate for better care from your provider.  If you feel you aren't being heard or your concerns are disregarded, find another provider.

 

It sounds as though you have already taken the first step to educate yourself about your condition.  I salute you on that.  It's so important for people to become knowledgeable about their disease.  It empowers them to make good decisions about their care and what personal changes they can make to increase their quality of life.  With knowledge comes the ability to advocate for better health care.  And if our attempts to improve our well being, especially when someone like you has taken the time and energy to educate yourself about your latex allergy, it's time to consider a change in providers. 

 

As a parent of a newly diagnosed child with mild asthma, I take his care and quality of life very seriously.  I'm fortunate to have a pediatrician that understands my concerns and our shared goals for his treatment.  Should this at any time change, I know I will hit the phonebook, pavement, and internet to find another provider.  I wish you luck in your fight to find someone who listens and provides you the care you need to live a symptom-free life.

Casey McNulty
Monday, October 20, 2008

Hi Aliceanne,

 

Thank you for your question. I'm sorry to hear about all the trouble that you've had! As a fledgling pharmacist, I'm also quite appalled to hear that the doctors would rather give you Valium than prednisone, as Valium is a controlled substance. I honestly don't know what to tell you, other than to suggest that you try a new clinic, or get your medical records from your old doctor (which show your previous treatment for latex allergy) sent to the current clinic.

 

Best of luck,

Casey

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