Pre-diagnosis limbo: "I knew something was wrong when..."

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Pre-diagnosis limbo: "I knew something was wrong when..."

VivienRomanHampton

Mar 9, 2018 01:38PMOptions

Before you were diagnosed with your condition, how long did you live in "limbo" with your symptoms and what was that like? Living with the unknown is a common part of the patient experience — PatientsLikeMe data shows that people with a wide range of health conditions live with their symptoms for several months or years before getting diagnosed.

Let's take a look at the diagnosis "lag time" and some common first symptoms for various conditions, plus anecdotes and quotes about members' earliest experiences with their condition (like this one from a member living with multiple sclerosis).

Diagnosis delay

The graph below shows how long it can take for people with various health conditions to receive their diagnosis. While it doesn't represent every patient's experience, it gives a sense of the hundreds — or in some cases, thousands — of days many people live with their symptom(s) before they get their diagnosis. (Click herefor a larger view of graph.)

* Median time between "first symptom" date and diagnosis date for members who've reported both on PatientsLikeMe, including (N=) 5,671 members with ALS; 12,870 with bipolar disorder; 40,846 with fibromyalgia; 430 with lung cancer; 7,918 with lupus (SLE); 14,929 with major depressive disorder; 30,262 with MS; 8,214 with Parkinson's disease; 9,100 with PTSD; 6,979 with rheumatoid arthritis

Disruptive, elusive symptoms

"I knew something was wrong, just did not know what," says one member with living with multiple sclerosis (MS) — a sentiment repeated in many forums.

What was your first symptom or hint that you had a health issue? When we ask members with certain conditions to recall their "first symptom noticed," here's a look at the three most commonly reported responses:

•ALS - Slurred speech, foot drop, muscle twitching

•Parkinson's disease - Tremor in hands, tremor (unspecified), balance problems

•MS - Fatigue, balance problems, numbness and tingling with pins and needles

•Lupus (SLE) - Fatigue, muscle and joint pain, joint pain

•Rheumatoid arthritis - Joint pain, muscle and joint pain, joint swelling

•Fibromyalgia - Muscle and joint pain, fatigue, pain (unspecified)

Many health conditions have at least some similar or overlapping symptoms, which can confuse both doctors and patients. "It's so weird because so many things feel like they may be something else," one member noted in a general discussion about patients' "first concerns."

Members living with mental health conditions report a variety of symptoms (click on the conditionand then "How it affects people" in the left-hand menu). Looking at the graph above, many with mental health conditions appear to live with symptoms for three to five years or more before their diagnosis. Stigma surrounding mental health diagnosis and treatment could add to this delay and is a common topic discussed in the forums and in the medical community. Here's just one comment from a member living with bipolar I disorder.

Years of "limbo"

Some conditions don't have a standard diagnostic test or tool yet. Months or years without a proper diagnosis can be "hellish," writes one member in the Parkinson's disease forum, which launched a discussion that went something like this (can you relate?):

"My Doctors ... and there were many .... misdiagnosed me for 10 lovely years! A hellish period..."

“It took 4 yrs in my case. The problem is no one seems to look at the person as a whole. The doctor's are all specialists dividing the body into specialized 'chunks.' It's hard to connect the dots this way..."

“It took over a year to be diagnosed. Then my family dr would not believe the diagnosis by the specialist and kept telling me that all the symptoms were all in my head and prescribing all the wrong stuff..."

“It took around 16 years to get diagnosed. Years of compiling a list of illnesses so long that even I started to think I was a hypochondriac..."

Many other communities have discussed their first symptoms and paths to diagnosis, including members with ALS, lupus, MS, and epilepsy.

Please share your story here or in your own condition forum. What was your first symptom? How long was it before doctors correctly diagnosed your condition? And what happened in between?

Sourced from patients like me