THINGS MYOSITIS PATIENTS WOULD LIKE TO TELL AN UNINFORMED
DOCTOR ABOUT MYOSITIS:
. There is pain with myositis.
. All patients are different and can have different symptoms with the same disease.
. Typical physical weakness results in a) difficulty swallowing, b) trouble getting up from chairs, c) falling, d) climbing stairs, and e) getting out of bed.
. Dermatomyositis patients have skin involvement and sensitivity to the sun.
. Patients perspire when others around them do not.
. Many myositis patients suffer from extreme fatigue. This occurs even without any exertion.
. There are many different degrees of illness with myositis from mild to extremely severe.
. Myositis patients might have a negative muscle biopsy, even when two are taken at the same time in different sites.
. The CK level is not always positive in myositis patients.
. Never accuse a patient of being a hypochondriac just because you can't find a diagnosis.
. Older patients can have myositis and all aches, pains, and bouts of clumsiness are not caused by getting old.
. The aldolase might be a better indicator of inflammation than the CK level.
. Myositis patients with elevated CK levels probably will have elevated CKMB levels also. This does not always mean cardiac involvement. Order additional testing such as a troponin to be sure.
. Myositis patients frequently have other autoimmune diseases. Their varying symptoms are real.
. Patient may have strength; but no endurance, e.g. may be able to lift heavy objects but can only hold it for a few seconds.
. Myositis is a systemic disease, which, in addition to its effects on muscle and skin, often affects other areas of the body such as the gastrointestinal, pulmonary, and cardiac systems.
. Patients react differently to medicines used in treating myositis. The same medicine might put one patient into remission and send another patient to intensive care.
. Tapering of prednisone needs to be keyed to the individual patient.
. Myositis patients look normal; but still can be very ill.
. Pain and flares are not always directly correlated with the CK level.
. Myositis is a chronic disease. You might get the patient into remission; but you are not going to cure them. While not curable, myositis is very treatable.
. Treatment should be based on how the patient feels, not solely on blood test results.
. It sometimes takes a long time to get the right combination and dosage of medicine to be effective.
LIVING WITH MYOSITIS:
. Myositis sufferers frequently cannot return to work and are truly disabled.
. Myositis affects the entire family unit. Prepare the patient for this.
. Include the spouse when possible in treatment plans, etc.
. Myositis patients need a handicap parking sticker.
. Myositis is a lonely disease and patients need a support group. These are usually on the internet because the disease is rare and there may not be other myositis patients in the same area.
. Myositis patients are frequently frustrated and perhaps clinically depressed.
. Myositis patients are extremely friendly, helpful, understanding, and loving to others who share their diseases.
. Family and friends will not understand why you are unable to participate in family event due to pain and weakness.
. Life with myositis will necessitate changes in lifestyle. Myositis patients may never climb mountains again.
. Memory loss. There is a failure to remember words or events.
. Lack of concentration. Sometimes difficulty reading and keeping a train of thought
PERSONAL PHYSICIAN SUPPORT:
. Treat the patient, not the disease.
. Life threatening complications can kill. Annoying symptoms can hurt. Myositis patients suffer from both. Doctors should treat all.
. Be open to all options of treatment. It does matter that you care and search for an answer.
. The physician should be up to date on all medicines being prescribed.
Listen to patients when they feel they are having adverse reactions to medications.
. Give the patient some indication that you give a DAMN.
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