THE TIN MAN GUIDE TO STIFF-PERSON SYNDROME
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Disclaimer: The material presented in this site is intended for public educational purposes only. The author is not offering medical or legal advice. Accuracy of information is attempted but not guaranteed. Before undertaking any diet, or health improvement program, you should consult your physician. The author is in no way liable or responsible for any bodily harm, physical, mental or emotional state of any patient reacting to any of the content on this site. Thetinman.org has not examined, reviewed or tested any product or service mentioned herein. We are not being paid to advertise or promote any product or service mentioned herein. The links are offered strictly as examples of resources available. The site assumes no responsibility or liability of any kind related to the content of external sites or the usage of any product or service referenced. Links to external sites were live at the time of creation of the link. Thetinman.org does not create content for or manage external sites. The information can be changed or removed by the external site’s administrators at any time and they are responsible for the veracity of their information. Links are provided to support our data and supply additional resources. Please report broken links to administrator@thetinman.org. Thetinman.org is not a charitable foundation. It neither accepts nor distributes donations or funds of any kind.

Every visit to a doctor involves filling out forms. If they are not mailed to you prior to your visit, it is important to have the information that may be required available when you go: current illnesses, medications, pertinent past medical history, surgical history, social history, family history. Sample forms are provided for you to print. Print as many copies as you need.


Your pharmacy records may not be available to your doctor. A doctor may have prescribed a medication you never took or no longer take. Make sure those are not listed under your current medications on your physician or hospital records.


List all of your allergies, medical and non-medical such as been venom, nickel, latex, food allergies, etc.


Short Medical History Form


In preparation for meeting with a new specialist, it helps to have a timeline of your symptoms, when they began, if they ended, what helped, and what did not.


Symptom Timeline


It is also important to keep records of your medical care at home. Recent legislation in the US has mandated the use of electronic medical records. However, that does not guarantee that all labs, hospitals, doctors, and specialists have access to all of your files. Electronic medical record software varies between healthcare systems, hospitals, and labs. Information that predates Electronic Medical Records may not be present on the system.


Full Chronological Medical History Form


Medication History Form


Lab Test & Imaging History Form


Vision History Form


Dental History Form


Building your own written health database makes you an informed patient able to discuss your care with the facts at hand. This is especially important when your health history is long, you’ve been passed from doctor to doctor, moved locations, gone through a lengthy trial and error of medications, or your memory is impaired by medications.


If you have kept all of the papers given to you by your doctors, insurance companies, pharmacies, and medical bills, you should be able to recreate some, if not all, of your past history.


List all medications you’ve taken, when, what dosage and for how long. It helps to keep all of your printed pharmacy medication receipts. You can keep the most current “tags” with you should you have to travel.


If you were prescribed a medication but never had it filled, it may appear on their system under your current medications. Or if you had it filled, but only took it a few times then discontinued it due to poor response or bad reaction, let them know that too. Mention any reactions you had. The medication may need to be listed under “allergies.”


List all of your allergies such as bee venom, nickel, latex, food allergies, etc. in addition to medications that caused hives, swelling, rash, anaphylaxis, panic attacks, etc.


List your diagnoses / illnesses as far back as you can remember with dates and durations, if possible, starting with the most recent to the oldest. This includes childhood illnesses like chickenpox and measles. Encourage your young family members to start keeping records. It may not mean anything at a young age, but it could help in middle-age when a lot of diseases crop up.


List all of your vaccinations, as a child if you have access to them, and as an adult. Do you get a yearly flu shot? Have you had the shingles vaccine or hepatitis vaccines? Do you have TB tests or vaccines for work?


List all surgeries and outpatient procedures: the date, reason for the procedure, the resulting diagnosis, and outcome. Did you require further treatment for the condition? Did the condition resolve? You have the right to ask for a copy of your surgical report.


List any toxic substances you may have been exposed to: asbestos, fertilizers, weed killers, smoke, coal dust, and other environmental hazards or chemicals. Frequent exposure to chemicals used in the workplace can be toxic over time: paint fumes, turpentine, etc.


List all blood, lab, and imaging tests you’ve had, the dates, and the results if you have them. You are always entitled to a copy of your test results, even if the doctors do not always give them to you as a matter of routine. With the advent of EMR, you may be able to access some of your records online, including your pharmacy history. However, if your tests were done at an outside lab, the results may not be in their system. You do have the right to request a copy of your outside lab results from the lab or imaging center itself. There may be a fee. You may have to be politely firm in your request.


As recently as 1980, a visit to the doctor often involved the patient meeting him first in his office. He sat behind his desk and took down a full medical history.


The patient then went into the examination room, donned a gown, and the doctor did a full review of systems.


Sample Review of Systems


Then the physician would undertake a complete physical exam.


Sample Physical Exam


This is referred to as complete history and physical. These items are still frequently dictated, and billed for, even if they did not occur. You might receive a copy, usually not. If you do, you may not remember this exam taking place. Chances are, it did not resemble the report.


In today’s practice, you are often first seen by a nurse or nursing assistant who will ask you what your current symptoms are. S/he will take your height, weight, blood pressure, and pulse.


S/he will update your current medications. It helps to have them written down. Make sure to tell them if you have discontinued old medications, changed dosages, or begun new medications. Also list any over the counter medications or supplements you have taken since your last visit. This includes cold medicines, vitamins, laxatives, etc. Some of them can affect your blood test results.


The modern physician typically looks at your eyes, ears, nose, mouth, and throat. S/he listens to you breathe and your heartbeat. The neurologist will do a basic neurologic exam, which involves touching your nose, heel-toe walking, and tapping your elbows and knees to test your reflexes.


Basic Neurologic Exam


That may be the entire extent of your “complete” medical exam. No one takes the time to do a full review of systems anymore, although it can often be very informative when evaluating a patient for rare diseases. It is hard to know what to tell your physician when they ask what your symptoms are. You may dismiss things as irrelevant that could be related.


Filling in your own “review of systems” can help you document and note changes in your symptoms.


Personal Review of Systems


Pain is an intensely personal experience. Some patients are hypersensitive to pain. Others aren’t.  Use this sheet to rate your pain and show your doctor where it hurts.


Pain Inventory Sheet


Another factor that plays a part in any autoimmune disease is the stress factor. It can help to take a look at the stressors affecting your health.


The Stress Cycle and List of Stressors


As a patient with SPS with special medical considerations, it is important to carry an Emergency Medical Emergency form with you at all times.


Emergency Medical Form


Everyone needs at least one emergency medical contact. It may also help to have an emergency medical alert bracelet available through these sources or through your local pharmacy. There are many online stores offering customizable tags and USB drives to store your medical data on.


http://www.medicalert.org/


http://www.americanmedical-id.com/category/medical-ID-bracelets-62


http://www.americanmedical-id.com/


The drugs you take may require you to sign a pain management contract.


Sample Pain Management Agreement


New legislation has been passed in attempt to regulate prescription pain medication production, storage, and distribution. The purpose is to try to stem the illegal distribution and abuse of these drugs. However, the new procedures may have an unfortunate impact on patients taking chronic pain medication and benzodiazepines for an illness such as stiff-person syndrome. Carrying your prescriptions and emergency medical information is critical, especially if you are driving or traveling.


You will also be subject to periodic drug screening and possibly pill counting. A patient’s initial reaction to this is generally negative, perhaps feeling that their integrity is being questioned or their genuine need for the medication is being doubted. That is not the intention of the new rules. Again, documentation is your protection.


Legislation Regarding Pain Management


Sample Drug Screen Test


Can a drug test be wrong?


http://www.questdiagnostics.com/home/companies/employer /drug-screening/products-services/specimen-validity.html


Your general practitioner or family practice doctor may be intimidated by all of the new regulations and may force you to go to a pain management clinic for these prescriptions.


In addition to your medical history, it is important to make plans for your medical future.


This entails completing a Durable Power of Attorney and a Living Will.


There are online forms you can print and fill out or an attorney can draft them for you. The content may vary by state. You need to decide whether you want extraordinary measures to keep you alive or if you prefer to have a “Do Not Resuscitate” order in place. These are very difficult decisions to make and very hard conversations to have with your loved ones. However, it is crucial to make those decisions while you still can and that others are made aware of your wishes. You can revise the forms at any time.


At least one support person needs a copy of these forms. You should take a copy with you to the hospital if you are admitted. You can also ask your primary care physician to keep a copy on hand. Remember to update them if you make changes.


Sample Durable Power of Attorney


Sample Living Will

PATIENT FORMS

Getting a Diagnosis   Co-existing Diseases   Differential Diagnoses   Finding a Doctor   Types of Doctors


Patient Rights   Specialty Hospitals & Clinics   Prepare for an Appointment   Patient Forms

Disclaimer: The material presented in this site is intended for public educational purposes only. The author is not offering medical or legal advice. Accuracy of information is attempted but not guaranteed. Before undertaking any diet, or health improvement program, you should consult your physician. The author is in no way liable or responsible for any bodily harm, physical, mental or emotional state of any patient reacting to any of the content on this site. Thetinman.org has not examined, reviewed or tested any product or service mentioned herein. We are not being paid to advertise or promote any product or service mentioned herein. The links are offered strictly as examples of resources available. The site assumes no responsibility or liability of any kind related to the content of external sites or the usage of any product or service referenced. Links to external sites were live at the time of creation of the link. Thetinman.org does not create content for or manage external sites. The information can be changed or removed by the external site’s administrators at any time and they are responsible for the veracity of their information. Links are provided to support our data and supply additional resources. Please report broken links to administrator@thetinman.org. Thetinman.org is not a charitable foundation. It neither accepts nor distributes donations or funds of any kind.