821 posts in the category “Conditions”

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.

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Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”

Posted March 14th, 2018 by

Elizabeth is a member of the 2018 Team of Advisors living with MS and a self-described research addict. Here’s what she had to say about her experience contributing to research and why “it’s powerful to use a devastating diagnosis for good.”

I’ve always been a sucker for a focus group. Give me some free pizza and I’ll tell you everything you want to know about your product, service or ad campaign. In fact, I got into advertising as a career because I liked the research part of it so much.

So, when I was diagnosed with multiple sclerosis, I applied that same mindset to my disease approach.

The first MS research study I did came a few months after my doctor prescribed Avonex. For someone with a virulent needle phobia, a weekly intramuscular shot sounded almost worse than having MS. So I spent the next few months imagining myself on a beach—right before I tried in vain to push an inch-and-a-half needle into my leg. The meditation didn’t quite take, but my passion for research didn’t waiver (thank goodness for a husband who didn’t mind giving shots and, later, the Avonex quick inject pen!)

Next came the EPIC Study — “an intensive observational study of over 500 people with MS who have been carefully studied since 2004.” I even got my parents involved as a control group. Once a year for twelve years I’ve been getting evoked potentials, an eye screening, a hand-eye coordination exam, and a bonus MRI — I also play a dreaded number addition memory game. I’m proud to be part of this study—last week I was lucky enough to see some of the preliminary findings that I contributed to (hint: there is some AMAZING stuff happening in the MS therapy world.)

I made a brief, but unsuccessful, journey into a Copaxone clinical trial where I had the honor of getting lipoatrophy faster than any patient my doc has ever seen. My case even made it into a medical journal. And while the dents in my thighs never let me forget this one, I like to think my experience helped someone else avoid their own unseemly dents.

My research obsession doesn’t stop with MS. I fit a patient profile for a breast screening study to determine if mammograms alone or with a DNA test can improve outcomes for detecting early cancers. I was happy to be a part of this work, plus I learned I don’t have a carrier gene—a nice bonus of helping out.

Yes, health studies are a bit addictive to me. I get a thrill from trying a new approach or having my data contribute to a new protocol. And while there are different levels of research (especially when it comes to drug trials), every observation, every data point moves our collective understanding about MS and chronic illness forward. I’m grateful to play a role in that; it’s powerful to use a devastating diagnosis for good.

So, what’s next? The other day I heard about an MS gut microbiome study. The details are…a little gross. But sign me up!

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