2 posts tagged “delayed diagnosis”

Pre-diagnosis limbo: “I knew something was wrong”

Posted March 16th, 2018 by

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 here for a larger view.)

* 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 forum discussion.

Members living with mental health conditions report a variety of symptoms. 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.

How long was it before doctors correctly diagnosed your condition? Join PatientsLikeMe to connect with thousands of others who can relate.

Share this post on Twitter and help spread the word.


Searching for a Diagnosis: An Interview with Lyme Disease Patient Pampe

Posted November 9th, 2012 by

Lyme Disease Patient Pampe

Getting the right diagnosis can take many years, or in the case of PatientsLikeMe patient Pampe, many decades.  After experiencing her first Lyme disease symptom in 1973, it was not until 2012 that she finally received a diagnosis that explained her many symptoms.  Discover what hindered the process and what’s she learned along the way in our interview with this highly active member, who has contributed more than 12,000 posts to our forum since joining PatientsLikeMe in 2010.

1.  You had a very long journey to discovering your Lyme disease. Where were some of the obstacles?

The main obstacle to an appropriate diagnosis of Lyme disease for me was the lack of knowledge in the traditional Western Medical System. Had my general practitioner (GP) known about the testing for Lyme, I might have been diagnosed 10-12 years earlier. Many people go from doctor to doctor and undergo a horrific array of tests and medications before they find out it is Lyme disease.

2.  We have a new Lyme Disease Forum at PatientsLikeMe. What is that important to you?

After my diagnosis and two other members of the Fibromyalgia Forum discovering they too had Lyme, I think I was pretty vocal in expressing the need for a Lyme Disease Forum. There are several clinical studies indicating that many people with autoimmune disorders, fibromyalgia, chronic fatigue syndrome, multiple sclerosis (MS), ALS and Parkinson’s disease actually have underlying Lyme disease or co-infections.

3.  You have a three-star profile as well as more than 5,600 helpful marks for your forum activity, which means you are one of the most helpful members around! What do you get out of using PatientsLikeMe?

I have always considered it an honor to help people both professionally and as a volunteer. Most people come to PatientsLikeMe in a state of shock, sadness and loneliness. They need support and information, and PatientsLikeMe can provide that in many ways. I have tried to help with support and information. What I get out of it is the absolute joy of seeing someone rise above his/her diagnosis and find new ways of being. It has been my great joy to see 4-5 new people from other forums find a Lyme disease diagnosis after reading some of the information I posted.

4.  Your profile reveals that you have an interest in alternative medicine. Where does that stem from?

During my working life, I was a nurse and psychotherapist. I was lucky to train in areas where alternative, holistic practices were available. I have seen them work and work well in many instances. I personally use alternative care for most of my health needs. There is no doubt that what we put in our bodies (mentally, physically, emotionally or spiritually) affects our health. It seems reasonable to me that we then must look at all those things and change what isn’t working.