GETTING DIAGNOSED

• Last update 06/02/10
• Sound basis
  • The diagnosis of small-vessel vasculitis relies on a thorough history and physical examination, as well as relevant antibody testing including antinuclear antibody and antineutrophil cytoplasmic antibody, hepatitis B and C serologies, assessment of complement, immunoglobulins, blood count, serum creatinine, liver function tests, urinalysis, imaging (x-ray, CT scan, MRI, PET scan), and biopsy.
• Seek Expertise
  • if vasculitis is suspected, you need to find a physician well experienced in diagnosing and treating autoimmune vasculitides.
    • Most physicians will never have seen a case of vasculitis, or failed to recognize the few they might have seen.
    • Rheumatologists who specialize in vasculitis are a good first choice, although other specialists and internists may also be a good place to start..
    • Major medical centers where there is a vasculitis clinic are usually good, but medical centers are not uniformly excellent, not even for vasculitis..
  • Vasculitis Foundation consultants are listed at http://www.vasculitisfoundation.org/node/44
    • Don't hesitate to insist your physician consult with a specialist listed in the VF consultants list.
    • The VF can also help with local contact people who know of knowledgeable experts on vasculitis in their areas.
    • Click here for some international experts, not all consultants for VF.
  • The VF is hoping in the future to have a list of patient-recommended physicians accessible by members.
  • Click here to view an article adapted from the AARDA publication, InFocus, Vol.10, No. 22, June 2002. with more information on getting a diagnosis of an autoimmune disease.
• Many appointments
  • Most AV patients have had numerous visits to ENTs and other specialists before being correctly diagnosed.
  • Never hesitate to ask for a referral to a specialist, or an alternative specialist.
• There's the tendency of a given specialist to usually diagnose what ss familiar to them, not unusual conditions.  That can lead them to overlook the more rare differential diagnoses.
• Team Leader.
  • It's best to have one of your physicians knowledgeable in AV to take the lead in coordinating medical care with other specialists, and with the patient's primary care physician.
    • If a needed specialty isn't covered by your insurance plan, have your family physician make a case for going outside the plan.
  • The Team Leader should be the place where all lab, imaging, blood, urine, and other test results are consolidated.  The team leader should make sure all team members receive copies promptly of all new information regarding the patient.
    • As back-up information, keep organized copes of your own records.
  • The patient must make it clear to all specialists that they are to provide copies of medical records to team members and to the patient as standard practice.
  • If the Team Leader fails to keep others physicians and therapists informed, the patient or the advocate must take the initiative to see that the information is properly disseminated or find another leader for the medical team.
• Team members
  • Some specialists that might be consulted during diagnosis of vasculitis are:
    • Dermatologist (skin)
    • Hematologist (blood)
    • Pulmonologist (lung)
    • Cardiologist (heart)
    • Neurologist (nervous system)
    • Ophthalmologist (eye)
    • Urologist (urinary tract and urogenital system)
    • Nephrologist (kidney)
    • Infectious disease specialist
    • Wound specialist
    • Dentist
      • Occasionally cases of WG are first identified by dentists. Such patients may have "strawberry"� gums.
  • Make sure your team members understand you expect them to communicate and function as a team.
• Patient recommended
  • Local Vasculitis Foundation support group contacts may recommend physicians they've found satisfactory.
    • Click here to see the support page of the VF for local contact information.
    • Future changes may include a database with access restricted to members-only to enter names of physicians found to be effective in treating an AV.
• Discrimination
  • Women especially are often told they are imagining or exaggerating their ailments.  This is not always true.  Women know their bodies and know when something is not right.
  • Physicians sometimes don't understand that AVs may present in patients outside the expected age ranges and without expected symptoms and test results.
• Persistence
  • It is vital to keep looking until you get positive answers and effective treatment.
    • Ask to be on the cancellation waiting lists to get earlier appointments.
    • If in serious trouble, go to an Emergency Room and hope they have the expertise needed.
      • Explain you have or suspect an autoimmune vasculitis and ask for ESR, CRP, ANCA, anti-PR3, anti-MPO, creatinine, imaging tests of affected areas such as X-ray, CT scan, MRI of affected areas.
    • If one can't locate the needed expertise locally, then one must resort to a major medical center or teaching hospital.            
      • It seems best to be seen by a "Fellow" or "Department Head", but not always.
      • An intern or resident may have more recent training that included the rare autoimmune vasculitides.
      • Two notable Vasculitis Centers are at Cleveland Clinic and Johns Hopkins.
    • If you don't get satisfactory answers from your initial physician, get a new physician.
      • Ask for a referral to one of the nationally recognized vasculitis nodes, or to major medical clinics.
      • Keep trying until you get good answers and effective treatment.
• Measurements
  • Initially and perhaps periodically after diagnosis, the patient should be evaluated using one or more of the three measurements widely used to evaluate the disease state.
    • Measurements in use are: BVAS, BVAS2003, WGBVAS (for Wegener's granulomatosis), DEI (Disease Extent Index), and FFS (Five Factor Score).  Results using the five to assess WG resulted in comparable assessments.
• Changing Physicians
  • When to change physicians:
    • When your physician doesn't have sufficient experience with your disease.
    • When your doctor doesn't like it when you ask questions.
    • When your doctor doesn't listen to you.
    • If your doctor can't explain your illness to you in terms you understand.
    • If you feel bad when you leave your doctor's office.
    • If you feel your doctor just doesn't like you -- or if you don't like him or her.
  • Every new physician will want a medical history, and there are usually a number of physicians involved over time.
    • Keep your records up to date in your files.
      • Have a summary history of major surgeries and illnesses readily available.
      • Have an up-to-date detailed record of medical history, surgeries, illnesses, medication history, current symptoms.
      • Include a list of all current medications, supplements, prescription and alternative medications current.
    • Insist on a copy of all your medical records when changing physicians.
• Medical Screw-ups
  • Click here for information to view a web page, "Tips to prevent medical errors".
  • Click here for information on how to leave the hospital ALIVE.
  • Consider very carefully the possibility that a lawsuit against a health care provider may result in changes in health insurance and limit access to desired medical care (blacklisted).

THIS SITE

• Intent
  • To assist vasculitis patients in getting early diagnoses, effective treatments, and to advise of patient, organization, and scientific resources concerning vasculitis.
• Sources Used
  • The following information is derived from a variety of sources over some ten+ years and is not to be considered as medical advice, but merely the opinions or experiences or findings of the writer who is not a physician and has no medical training.
  • Much comes from Medline abstracts and medical journal articles on vasculitis.  Some is from autoimmune vasculitis patients and carers, some from newsgroups,  internet web pages, etc. that also deal with vasculitis.
  • The compiler has attempted to use only recent valid medical information regarding vasculitis, but cannot guarantee the validity nor the currency in every case
• Limitations
  • No medical decisions should be made on the basis of information on this web page or on associated linked documents and web pages unless those are from a recognized medical professional or professional medical publication.
  • Limits to this web page concerning vasculitis:
    • The author/compiler/editor of this web page and related pages has had NO medical training.
    • Only autoimmune vasculitides will be considered, not hypersensitivity vasculitis nor vasculitis as a result of an allergic reaction to medication or vaccine..
    • Most sections apply to most autoimmune vasculitides.
      • One refers specifically to Wegener’s granulomatosis.
• Terminology
  • Some abbreviations and equivalencies are:
    • Hereafter, “autoimmune vasculitis” may be abbreviated “AV” or “AVs” for plural.
    • The term “Prednisone” is sometimes used where it or a similar glucocorticoid might be prescribed to treat vasculitis.
    • “Immunosuppressives” used to  treat vasculitis are sometimes abbreviated “ISs”.
• Updates
  • This update was on June 1, 2009 and is a complete rewrite of the former web page at http://www.wegenersgranulomatosis.net that also dealt with vasculitis.
• Files & links – Vasculitis related.
  • Click here to view a web page listing all the links and files from this page.
• Tables & Figures – Vasculitis related
  • Click here to view a listing of the tables and figures in this web page.
• Disclaimer
  • ALL MEDICAL QUESTIONS, SYMPTOMS, CONCERNS AND PROBLEMS SHOULD BE DIRECTED TO APROPRIATE LICENSED MEDICAL PROFESSIONALS.
  • The writer/editor/compiler does not vouch for the accuracy, completeness, nor applicability of the information included on this site to any person, whether a vasculitis patient or otherwise. 

This website and all content - © Copyright 2009, Bruce Macdonald. All Rights Reserved.
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Compilations, Observations & Suggestions by a Vasculitis Patient This web page hosted courtesy of Andrew MacLean at www.andrewmaclean.com Please use the SITE PLAN for advanced navigation if slide-out menus do not appear.

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