Multiple sclerosis and misdiagnosis: One patient’s long journey
21 Oct 2019 • 1 comment
Hello and thank you for being willing to tell your story. Can you tell us a little about yourself?
My name’s Chrystele. I’m living with Secondary Progressive Multiple Sclerosis (SPMS), which I’ve had since childhood, but was only diagnosed in 2007 when it began affecting my mobility.
What were the first symptoms and when did they show up?
The very first issues showed up in 1981 when I was 12 years old: fatigue. At first, it was cyclical (around every 6 months), and then it became a chronic condition. I also started suffering from paresthesia (tingling sensations or numbness) and vertigo, which came and went and which were originally chalked up to panic attacks.
In 1988, during my exams, I started having vision problems which kept getting worse but were explained away as stress or coming from my astigmatism.
In 1995, I began suffering memory loss and confusion and in 2004, the first mobility issues started.
In 2005, I began having problems with my urinary tract and in 2006, sensory disorders.
One year later, was when I really started having mobility issues, caused by muscle weakness and I began losing my balance.
What kinds of medical professionals did you see?
I saw quite a few GPs, always hoping that they would be able to figure out what was wrong with me. One day, the replacement of one of my GPs told me to go see a neurologist if the numbness in my hands didn’t go away. But I was right in the middle of exams at university at the time and he didn’t give me the referral letter to go see the specialist. One year later, I was diagnosed with Remitting Multiple Sclerosis (but now I believe I was already in the progressive stage of the disease).
Did you receive diagnoses for conditions other than MS?
Yes, I also have gastroparesis which might be linked to my MS. It causes stomach pains because my stomach doesn’t empty itself properly, too slowly to be exact.
There was a time period when all the cognitive issues were just beginning, that I was being treated for anxiety and social anxiety disorder (SAD). They even thought I might be anorexic because I couldn’t eat anymore, but that was because of the functional dyspepsia (digestive troubles), caused by the gastroparesis.
Were you put on treatments for all these conditions that you didn’t really have?
I took magnesium pills when I was small, then anxiolytics and anti-depressants, as well as nutritional supplements to try to help me gain weight.
How did the people close to you react during all of this? Did you feel supported?
My brothers thought I just needed a “good kick in the arse” because it was “all in my head”. All the doctors had the same opinion!
Then, there was one of my old doctors, who’s still my aunt’s GP, who confessed to her that he never said anything at the time (even though he knew it was MS), because he thought we weren’t ready to hear the truth! Which is just completely daft!
The only one who ever believed me was my mother. She was convinced that my symptoms were real and that it wasn’t “all in my head”, that I was really suffering from “something”, even if the doctors couldn’t find it.
How was your MS finally diagnosed? By which physician and by means of what test?
When I went back to my family doctor, who I already talked to about my urinary tract problems and all the other weird stuff that was happening to me, she saw I was suffering from neurological issues after she did a Babinski Reflex test on my feet. She then sent me on to a neurologist who quickly diagnosed me with MS after several tests (including 2 MRIs)
What treatments do you take and do they help?
I’ve been on Copaxone since 2010 and on silodosin (for my urinary issues)
Before I would have a really bad relapse every 10 months or so. But since I’ve been taking Copaxone I’ve been a lot more stable.
In 2014, my neurologist told me that I’d regressed from a “benign” Remittent MS (still able to stand up after 20 years!) to a progressive secondary form of MS and that I needed to be put on an immunosuppressant treatment (something I was not looking forward to!).
And how are you today?
My MS is getting worse and worse.
Today, I can’t walk anymore with help: I lean against the wall when I’m at home, or I use a cane. Outside I lean on my home health aide’s arm, or I have an electric wheelchair.
It’s started to spread to my right side too. Before it was only the left side (weakness in my leg, arm and hand).
What’s the hardest symptom for you to live with on a day to day basis?
The vision problems were the most frequent issue at the beginning, now I have more trouble with urinary tract infections and getting around, especially walking which means I'm basically handicapped. I have to be very careful about avoiding urinary tract infection risks, even more so because it’s difficult for me to take antibiotics (because of my digestive issues). The first time I got an infection, which my GP misdiagnosed as just a cystitis, I ended up having to get intramuscular injections (wide-spectrum antibiotics)
What advice would you give to a patient who’s still fighting to get diagnosed?
My first piece of advice would be: trust your first instincts. Keep insisting and make sure your doctor takes you seriously instead of just going from doctor to doctor hoping to find the “one” that going’s to discover what’s wrong with you.
Choosing the “right physician” is never simple and every misdiagnosis will only make your anxiety grow.
Anything else to add?
Misdiagnoses are more common than you might think. For some illnesses it can be a real issue: with multiple sclerosis, for example, we know that the quicker you start treatment, the better the result!
Who knows? Maybe I’d still be in remission if it hadn’t taken so long to get the “right diagnosis” (and I would have gotten the care I needed much sooner)!?
Thank you, Chrystele for your insightful testimonial. What about you?
What were your first symptoms?
How long did it take you to get diagnosed?