Discovering and documenting all of your story
What causes ALS is unknown, heavy metals, viruses, bacteria, fungi, or other toxins? It was very late in medical knowledge that a bacteria was discovered to be responsible for stomach ulcers. Only earlier this year it was discovered that the brain has a lymphatic system, as this June 1, 2015 article discusses, this new discovery.
The current medical system truly is not designed for ALS. A 10 minute doctor appointment does absolutely nothing to help, and discovers nothing about possible causes, or what can be treated within the body to improve outcomes.
Being ill informed reduced the opportunity for intervention even further. Because ALS shows up as a neurological disease, once long and drawn out diagnostics for the disease are carried out, there tends to be absolutely nothing done for the patient other than how to increase comfort as the disease progresses, and the disease progresses with nothing being done to treat what can be treated.
What is not done early is testing for heavy metals, pathogens, liver function, kidney function, and anything to give good base line data. Nor is good data gathered on medical history as to what may have caused the disease. Without this data, how do individuals trying to help themselves monitor their progress, or even know what to treat, and with ALS there is good reason to believe that secondary problems speed up the progression of the disease. It truly isn't even known if these "secondary problems" are in fact the primary problems as they go completely and utterly untreated.
So, in order to fight back and advocate for yourself, and believe me, if you do not advocate for yourself you will get nothing from the current system. Start by developing a detailed medical history. I love my sister dearly, very dearly, and a year into her disease symptoms I learned several parts to her story that I did not have a clue about even though I have more interest in her well being than any doctor and I used a lot of our common history in knowing things that she has been through to help guide me in how to help her.
In addition to the medical history, you need to have some idea of what can be treated, but being armed with a good medical history early can help.
So, what to consider when putting together your medical history? Nothing should be left out and here are questions to help guide you, but may not be a complete list in your case. Get out your word processor and copy the list to help guide you. Use titles, formatting, etc., to organize your account of your medical history so it is well summarized and easy to read, and add sections that are missing that make sense for your medical history. Your story is going to get at medical history that is NOT in your medical records, and going over medical records can also help you to remember medical facts that may have seemed insignificant or that you have forgotten.
Long Term History
Spinal or head injuries and diseases
Have you every had injuries to your head or spinal cord?
Brain swelling?
Immune history
What does your antibiotic history look like?
Have you had recurring infections?
List respiratory infections that you know you've been treated for, the symptoms and treatment. If you know the pathogen, list it.
List kidney or bladder infections, symptoms, treatment and any identified pathogen.
Childhood infections such as mumps, chickpox, etc.
Cold sores? Other herpes?
Boils?
Fungal infections?
Yeast?
Cold frequency, how often and how bad.
Serious colds or flues? How often have you had cold or flu that totally wiped you out and for how long?
How often do you get antibiotics for infections?
Other skin rashes?
Brain infections, shingles, etc?
STD?
Other?
Digestive History
Stomach and digestion?
Are you prone to constipation or the runs?
How well has your stomach and bowels worked for you throughout your life? 80-90% of immunity is from the stomach so really consider this history.
Bowel habit and history.
Food poisoning.
What gives you nausea? How frequent?
Vomiting history.
Ulcers?
Indigestion?
Toxic exposures
What kinds of mold exposures have you had? Ever found any in walls in your home, or under your carpets?
Do you know of any heavy metal exposures? What about dental fillings?
Solvent exposures?
Ever felt "poisoned?"
Water source (well water, city water?) Any problems that you know of with water source?
Other toxic exposures.
Kidney function
Bladder infections?
Bladder habits, how frequent is your urine, color? Any periods with problems?
Swelling?
Liver function
Any liver disease?
Any unusual tests with the liver?
Gallstones?
Hepatic incidents?
Any gallbladder problems?
Metabolism
What is your metabolism generally like?
Ever had issues with parts of your body?
Heart function?
Heart problems?
Cholesterol? (Satin drugs are known to worsen ALS outcomes. If you have or suspect ALS, and take satin drugs see your doctor immediately)
Other?
Eye Health
Eye floaters?
Changes to vision?
Are there times of the day when vision is worse than other times?
Light sensitive?
Other?
Hormonal systems
Thyroid?
Adrenals?
Estrogen/Testosterone?
Other hormones?
Other health issues
Ear and vertigo or balance?
Joints?
Vision? Take a vision contrast test. You can do it for free here, https://www.vcstest.com/. If it comes back with no problems, great, if it comes back positive, pay for the test and include it in your medical history. It is a cheap test, but gives you evidence to help you get other treatment.
Insect bites. frequency, and what kind? ticks, bed bugs, spiders, mosquitoes? At home or from traveling?
Illness while traveling?
Medications
Medications you've taken. You may not remember what the medications were, but you should remember the history around them, so, what happened, what do you know about what you took, and how often?
Medications you do not tolerate
Other?
Diet?
Describe your diet. What does you plate look like at a meal? Do you eat at home or out? Do you shop organic? How much dairy, wheat and nuts are in your diet? Do you have known food sensitivities? Seafood, meat, what kind?
Supplements
What kinds of supplements and/or medications do you take?
Vaccination history
What vaccinations did you get as a child?
How often do you get a flu shot?
Animal and insect bite history
Ticks?
Fleas?
Mosquitoes?
Spiders?
Dog or cat?
Other?
ALS history
This part of your history relates to what happened happened in the year or two before you noticed symptoms, and then what symptoms you experienced. List any and all possibilities of pathogen exposures, (mold, fungi, sewer, food poisoning, insect bites), solvent exposures, exposure to bodies of water, heavy metal exposures, unusual medical tests, illness, feelings of poisoning, digestion problems, liver problems, and the symptoms of your disease, where it started, falls, coordination, etc.
Medical testing history
Make a list of your medical tests by date. You want to highlight any abnormal results.
