This article covers one of the best resources available for Undiagnosed Patients. There’s a common misconception that patients who are working or have a spouse/partner that makes too much money cannot qualify for assistance to help pay for the costs of medical care but that’s actually not true. I’ve personally been recommending the Buy-In Programs for years now because it literally saved me from financial ruin in the process of searching for a diagnosis. Getting answers usually requires extensive medical testing, multiple specialty office visits, and different therapies or treatment – which can easily cost a small fortune, even if you have “good” insurance.
Since restarting my search for a diagnosis in February of last year when I started at the research hospital, I’ve been through a lot of doctors and a lot of medical testing.
Well, it got me thinking – Just how many tests have I done?
Being as OCD as I am, I decided to look through my list of notes and test results so that I could write it all down (in list form of course). Eventually, I’m hoping to upload some of my test results – along with an UPDATED diagnoses list – for comparison.
Doctors I’ve Visited
Primary Care Doctors:
- Scarred and butchered my scalp biopsy (with no anesthetic, by the way), forgot to order tests, couldn’t fill out paperwork, the office staff was horrible, the list goes on and on…
- Told me she’d review my record and call me with a plan- never called after multiple attempts over 2 months. I went as far as to file a complaint with the office manager, who promised me at least a call, which never happened.
- Told me I was simply dehydrated and depressed, despite having initial diagnoses at the time.
- FINALLY – a good PCP and my current doctor.
- Vascular Surgeon #1
- Vascular Surgeon #2
- Vascular Surgeon #3
- Neurology #1
- Neurology #2
- Dermatology #1
- Dermatology #2
- GI surgeon
- Gynecologist #1
- OGynecologists #2
- Physical Therapist
Procedures (Under Sedation)
- April 2015 – Esophageal Dilation and Internal Biopsies
- May 2015 – Endometrial Ablation
- December 2015 – Venography
Medical Testing and Imaging
- CT Abdomen & Pelvis
- Pulmonary Function Tests – Pre & Post
- Allergy Test – Skin Scraping
- Abdominal X-Ray
- Tailored Barium Swallow
- Colonoscopy & Endoscopy
- X-Rays of both Ankles
- Abdominal Ultrasound RUQ
- Gastric Emptying Study
- CT Angiogram Abdomen & Pelvis
- Electroencephalogram (EEG)
- Fecal Cultures
- Electrocardiogram (ECG)
- Echocardiogram with Agitated Saline
- Skin Biopsy
- Cardiac MRI
- Exercise Stress Test
- Holter Monitor
- X-Ray of Spine
- Sitz Marker Study
- Upper GI Series
- Small Bowel Follow Through
- Hydrogen-Methane Breath Test
- Abdominal X-Ray Supine
- Hepatobiliary (HIDA) Scan
- Electrocardiogram (ECG)
- Holter Monitor
- Renal Ultrasound
- Anorectal Manometry
- MRI Abdomen
- Tilt-Table Test
- Electrocardiogram (ECG)
- MRI Pelvis
- MRI Head/Brain
- Transvaginal Ultrasound
- Renal Ultrasound
- Electroencephalogram (EEG)
- Transvaginal Ultrasound
- CT Maxillofacial
Blood and Urine Screening
- Urinalysis and Urine Cultures
- Routine Blood Screens:
- Comprehensive Metabolic Panel (CMP)w/ and w/o eGFFR
- Complete Blood Count (CBC) w/ and w/o Differentials
- Electrolyte Panel
- Liver Panel
- Kidney Function Tests
- Celiac Disease Panel
- Thyroid Screens
- TSH 3rd generation
- Electrolyte Panel
- Lipid Profile
- Cholesterol Levels
- Serum Vitamin Assays
- Vitamin D
- D 25-Hydroxy
- Vitamin B12
- Folate/Folic Acid
- Vitamin D
- C-Reactive Protein
- Antinuclear Antibody Panel (ANA)
- Serum Iron Testing
- Iron and Iron Binding Capacity
- Rheumatoid Factor
- Creatinine with eGFR
- Erythrocyte Sedimentation Rate (ESR)
- More Specialized Blood Screening:
- Antibody Screening
- Tissue Transglutam AB IGA
- IGE-RAB, Chronic Uticaria
- IGE Receptor Ab
- DNA AB (DS)
- anti-RO/SSA, and Anti-LaSSB
- CCP Antibodies
- Beta-2 glycoprotein IgGG and IgM
- Sjorgen’s SSA
- B. burgdorferi Screen Rflx
- B. burgdorferi Ab, IgG,IgM
- B. burgdorferi Ab, IgG (WB)
- B. burgdorferi Ab, IGM (WB)
- Growth Hormone Somatotropin Test
- Cortisol (AM)
- Blood Clotting Tests
- Prothrombin Time (PT)
- International Normalised Ratio (INR)
- Dilute Russell’s Viper Venom Time (dRVVT)
- L-Protein Electrophoresis
- Nutritional Panel w/ Prealbumin
- Blood Typing
- Antibody Screening
This ride that takes me through life
Leads me into darkness but emerges into light
No one can ever slow me down
I’ll stay unbound”
Despite having a rough start this morning, I did wake up feeling a lot less emotional about the future prospects of my healthcare. I knew these feelings wouldn’t last too long, they never do, but I am glad the darkness has finally passed. After I woke up super early to take the foster dog to the vet clinic to get neutered today (which was cancelled, as he is still too skinny to go under anesthesia), I came home, finished an assignment for school, and then spent the good majority of the day napping. I think I just needed to catch up on some rest to find myself again. I often tend to keep pushing and pushing myself until I finally break down, both physically and emotionally.
“Sometimes when we’re young, and always on the run
It gets so dark and I know that place yeah
So don’t be too concerned, you’ve got a lot to learn
Well so do I and we’ve got plenty of time yeah
Don’t fall off the track yet with so many races to go
After my much-needed slumber, I went to a follow-up appointment with my primary care doctor. I brought all the updated, abnormal test records from the last month or so. She seemed quite elated that the specialists were finally getting close to a diagnosis and that there is finally some answers. She believes there is a hidden autoimmune issue going on, perhaps still Lupus, but I may just be lucky enough to be seronegative autoimmune (where I do have autoimmune disease, but it won’t ever clearly show in my blood work). I asked her about a referral to another vascular surgeon for a second opinion. She said she didn’t think it was necessary, as the cardiologist seems to have everything under control and could do possibly do the surgery himself, as many vascular surgeons and cardiologists work either closely together or doctor may be trained in both areas. At first I was confused about this statement and got kind of frustrated, thinking to myself, really? She won’t give me a referral? But I guess it makes sense. I told her what the vascular surgeon originally had said, about how these conditions don’t really exist and that if they did actually exist, there was no way I could have all of them (despite the CTA results). She looked at the report and says it clearly shows I have them, and that sometimes specialists often don’t have the best ‘bedside manner’. Her theory is that he is set in his ways and is probably a great surgeon “for horses” but not for “zebras”.
She did tell me, that doctors often forget that we don’t know what happens “behind the scenes” in cases that are as rare as mine. Typically, the doctors up at the specialty hospital are more than likely doing research and setting up my move over to the dysautonomia clinic in Denver. She says there, I will see even more specialized-specialists (I assume like an electrocardiologist, etc.) and she wants me to hang tight for now and be patient (easier said than done), that they will probably have a vascular surgeon on hand (or fly one in) who is more knowledgeable on these types of conditions. Many times, she said, while I am supposedly just waiting for the last of the test to “rule out the final things”, the doctors are preparing and researching the next steps in creating a plan of action for when I transition to the “next level” (a new, more specialized clinic). I hope she is right. Maybe I worked myself up for nothing, but this wasn’t the first time I’ve experienced this situation with doctors over the years. I’m trying to not get my hopes up again, but maybe she knows more than she is telling me. I guess I’ll do my best to hang in there until I follow-up with the cardiologist in a few weeks.
“Some live so wrong, with what we do is each his own
But living in fear, endless shame for countless years
I never lived in fear I knew I’d die another day
I never viewed my life as something… slipping away”
Tomorrow I go back to the specialty hospital for a hydrogen-methane breath test to see if I have SIBO (small intestine bacterial overgrowth) or food intolerances. I’m not hopeful on this test, but again, it’s one of the final GI tests left to do.
The hardest part is always the waiting. I need to try and remember to live the best I can in the meantime, no matter how frustrated or tired I get with the process. Just sometimes, I feel my life is just passing me on by and I get scared that it will be too late before I reach the end of this road or that I will never ever truly live again. That’s a terrifying thought for me because there is so much still that I want and need to do in this life. But for now, I wait.
Unbound the Wild Ride
“There’s nothing here to take for granted
with each breath that we take
the hands of time strip youth from our bodies
And we fade
as time goes on…”
Lyrics: Unbound the Wild Ride by Avenged Sevenfold
When you’re sick, you go to the doctor.
You expect them to diagnose the problem,
and give you a pill to make it all better.
In chronic illness, however, it doesn’t happen that way.
Chronic means long-term, ongoing, and long-standing.
In many cases, there is no cure.
Or there is no diagnosis to treat properly.
Or they’re medicating the wrong disease due to misdiagnosis.
Sometimes the only option is to treat the symptoms.
In chronic illness, you often have a team of doctors of various specialties.
They all have their own ideas on how to treat or manage your disease.
Prescriptions for this, pills for that.
And before you know it, your list of medications is a mile long.
It’s no surprise then, that medicine is one of the most important components
to managing chronic illness.
Here are some tips and tricks that I have found to be helpful with medication management:
How to Keep Track of Medications
Write down all of your prescriptions.
Make a list of all the medications you are currently taking (for both a daily basis and as-needed basis) and keep a copy at your home.
Make sure you have the name of the medication, the dosage, and how many times a day you need to take it. It’s helpful to leave room for notes, where you can write down possible side-effects or any interactions with other medications.
There’s a ton of free printables available on the internet that you can use for a medication tracker. You can also make your own list in Excel. I personally like to keep one copy on the computer and one paper copy (especially when starting new medications, so I don’t forget when and how to take the new meds).
Let family or others know where they can find a copy of this list, just in case there is ever an emergency and they need to notify emergency responders about your current medications.
Bring the list to all your appointments.
It is important for all your doctors to know which medications you are currently on and which ones that have been stopped.
This will also help to make your appointment (and overall management of your condition) faster and more efficient as well.
You won’t have to try and remember off the top of your head when asked, you’ll know the exact dosage your taking, and it can be entered into the computer without you having to spell it out for the office staff.
Help in Remembering to Take Medications
If you’re anything like me, the more and more medications I am prescribed, the harder it is to keep track of which ones I have or have not taken throughout the day.
When I first became sick I only took medications as needed, which were easily kept nice and organized in the medicine cabinet. As time went on, medicine was needed on a daily basis. After three daily medications were on the list, I opted to buy a daily pill organizer so I wouldn’t forget if I took my medication or not. Had a few too many close calls of almost taking a double dose and didn’t want to risk it any longer.
I purchased a daily pill organizer just like this one.
It was cheap, small, and did the job.
After outgrowing this organizer, I now use this one as a travel case that I keep in my purse.
I put a few “emergency medications” in each slot, which I have relabeled with the name of the medications, versus day of the week.
Of course, as my condition progressed, more medications were prescribed and I had no choice but to upgrade my pill organizer. Not only were my pills no longer fitting into the single compartments, but I was getting confused as to which pill was to be taken at what time of the day and what medications went together (and which ones should be spaced out).
I think it was under $5.00, and so far it has worked great for what I need it for.
There are four sections to each day: Breakfast, Lunch, Dinner, and Bedtime.
I only keep my daily meds in here, not the “as needed” pills.
Other ways to organize medications:
I learned about pillpack.com from one of my readers, who passed along some information hoping to help with the management of my illness.
I love the idea behind the pills packs and it seems like an easy way to keep track of all your medications, considering they come individually packed and labeled with time, date, and what pills are included. You are also able to separate the packets into daily pills and “as needed” pills, as well as adding in non-prescription medications (such as vitamins, supplements, or pain relievers). Plus it’s delivered to your home, making it extremely convenient for those us of who have trouble leaving the house.
Pill Pack does accept most insurance plans, so you only have to pay your insurance deductible and shipping is always free. Unfortunately, my insurance isn’t accepted as of yet, but I’m hoping it will sometime in the future because this service would be really helpful in managing all of my medications (especially since I’m likely to outgrow my current system here soon). Plus I hate waiting at the pharmacy for refills.
If you’d like more information, please visit pillpack.com/info or you can email email@example.com
For time sensitive medications:
There are some newer pill organizers that have an alarm inside that lets you know when it’s time to take your medicine. They’re a little more pricey but definitely high tech and efficient.
However, you can also download an app or set an alarm on your phone for a medication reminder if you wanted to stay on the cheaper end and use a more standard pill organizer.
Ways to disguise and carry medications with you:
Especially useful if you are worried about someone stealing your medications (particularly controlled substances).
Cabinet Organization of Medications:
Of course, this depends on how many medications you have and how many of those are taken on a daily basis. I am looking to do something similar for my medicine cabinet and/or under the sink for any first aid materials and over the counter medications.
How to Manage Side Effects
“Nearly all medications have side effects. When you begin taking a medication, it is important to know:
- What are the potential side effects?
- If I experience a side effect, what can I do?
- Which symptoms should alert me to consult my healthcare provider?
Actions you can take
It is helpful to know what you should do about a possible side effect from the start. You should also know which side effects are safe to treat yourself and when to contact your healthcare provider. There are simple steps you can take to manage common side effects:
- Record any side effects – keep track of your side effects and talk about them with your healthcare provider during your next visit.
- Nausea/Upset Stomach – take medicine with food or milk – however, be sure to check with your provider that the medication may be taken this way. Also, avoid spicy foods and heavy meals. Drink water. Check with your provider or pharmacist about using over-the-counter medications.
- Diarrhea – Avoid caffeine, highly acidic foods and beverages, foods high in fiber, and spicy foods. Check with your provider or pharmacist about using over-the-counter medications.
- Constipation – Drink plenty of fluids; drink lots of water. Eat foods high in fiber such as fruits and vegetables. Exercise. Ask your provider or pharmacist about using over-the-counter medications.
- Dry mouth – drink water. Suck on ice chips or sour candy to promote more saliva.
- Fatigue/lack of energy – eat a balanced diet, get plenty of exercise, and sleep a minimum of 7 hours a night.” (rxoutreach.org)
Other tools to monitor side-effects
My favorite app that I have on my phone that helps with managing my medicine and potential side-effects or interactions is the drugs.com app. You can lookup drug information, identify pills, set medication reminders for refills or to take your pills at a certain time, check interactions, and store personal medication records and history.
It’s the easiest and most user-friendly app I have found so far. I get the most use out of the “my drug list”. It’s handy if you forget your medication list for a doctor’s appointment and it gives you warnings as to what medications are high, moderate, or low risk of interacting, as well as how your medications interfere with your listed medical conditions. Here are a few screen shots from my personal application:
This screenshot shows the general tools available in the application.
In the “my drug list” section, it lists names of medications, dosages, and gives you color warnings (the triangles) to any alerts of potential interactions.
You can also click on each warning for more information.
If you click from here, it will tell you the exact problems
that can occur with each potential drug interaction.
Ways to Prevent Medication Errors
Medication errors CAN and DO happen!
Your prescription goes through many sources and people before you can take it:
*The doctor writing the prescription.
*The nurse if the prescription is called into the pharmacy.
*The pharmacy technician who processes the order.
*The pharmacist who count the pills and then issues the prescription.
*The distributor/manufacturer of the pharmaceutical.
Not to mention your own potential to cause human error.
It’s important to be aware of the possibilities and take steps to prevent it much as possible. Your life could be at stake if you don’t.
Ways to prevent medication errors:
Ask your doctor questions if you are receiving a new prescription.
What are the side effects?
What is the benefit of taking this medication?
Will this medication interact with anything I am currently on?
What signs or symptoms should I be looking out for?
Read the prescription paperwork carefully and check for accuracy.
Does all your information look correct?
Name, address, phone number?
Type of medication and dosage?
Use the same pharmacy for all prescriptions.
This will help to keep you not only organized, but the pharmacist will be aware of any potential drug interactions.
Talk to the pharmacists when you pick up the prescription.
They know medicine better than anyone else.
Build a relationship with them.
Call in prescription refills at least a week or two earlier.
Prevents rushing to have it filled (both from the doctor and the pharmacy), which can create a greater potential for errors to occur.
You won’t run the risk of running out of meds, which can cause withdrawal symptoms, further health problems, and even death in some cases.
Always check the bottle’s label to make sure it’s correct and count the number of pills when you first pick up a prescription.
Other medication tips:
Never stop a medication without talking to your doctor first.
Take medications as prescribed and follow the directions on the bottle. This includes finishing the entire prescription (especially with antibiotics) and when tapering medications (like prednisone).
Make sure you know the possible side-effects, including the signs of an allergic reaction to the medication.
Trust that the doctors have weighed both the pros and cons of prescribing a particular medicine and that they only prescribed it because they believe it can help to alleviate your symptoms.
If you’re not at all comfortable with a certain medication, discuss it with your doctor.
When in doubt, call the doctor or the pharmacists and ask. Better safe than sorry.
But most importantly, remember that: