4 Sure-Fire Ways to Get the Primary Immunodeficiency Diagnosis You Need

I’m sick as hell and I don’t wanna take it anymore! Won’t somebody please diagnose me?!

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Over at RareConnect, a man named Blair writes about his symptoms: hearing loss, hives, joint pain, and eye problems. He’s 26 years old and doesn’t yet have a diagnosis, though he suspects Muckle-Wells Syndrome.

Scroll down to the comments on that page and you’ll find words of encouragement from Tom: “As a parent of a child with CAPS, I know how much of a difference both diagnosis and treatment have made to our little girl.”

So many people, though, have the unfortunate experience of Blair rather than the good luck of Tom and his daughter–it takes them years, if not decades, to get that diagnosis.

If you’re someone who’s been living recurring symptoms from one of the primary immunodeficiency diseases like Muckle-Wells, here are 4 ways to speed your path to diagnosis and treatment:

1. Journal

Write your symptoms down. Record when they occur and the surrounding events so you can share accurate information with your doctor

2. Take (some) Matters Into Your Own Hands

We here at Patient Worthy are NOT advocating for you to use a kitchen utensil to cut off that weird growth  you’ve got. What we are saying is that technology can be your friend.

Search for your symptoms, read as much as you can, create a list of what you think might be wrong with you, and bring that list into your next doctor appointment. A word of caution, though: know the source of what you read and the date it was published because things change and not everyone is credible.

3. Be Persistent

As much as we want our doctors to have all the answers, we also need to accept that they’re human and, therefore, flawed.

So if you feel like you’re not getting the answers you want from your current doctor, find a different one. Get as many opinions as it takes, but don’t get complacent!

4. Go to the RIGHT Doctor

General practitioners/internists are great for certain things, but don’t have much experience with others. So after you’ve done your research and narrowed down what you think might be wrong, find a specialist in the field you need. Often, your insurance company’s website can help you find a specialist in your area. If that doesn’t work, try reaching out to a national charitable organization or NORD or be a complete machine in tackling your condition


If you have any tips for people searching for a diagnosis, we’d love to hear them! Just leave a comment below and get the conversation started.

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