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How Chronic Pain delayed my diagnosis of CIDP because of diagnostic overshadowing

What if I’d been diagnosed sooner?

It took four neurologists to diagnose my CIDP.  Looking back over old tests, the evidence was there from day one. But it took EIGHT years to get the diagnosis and to start treatment because my doctors stereotyped me as a malingerer and/or drug seeker or blamed my arthritis for my symptoms

The last three months have been hellish. You could say everything that could have gone wrong, did.  And no, that’s not a ‘negative’ attitude manifesting.  That’s a fair assessment of the facts.

But.

The One Big Positive Thing was that it was all worthwhile, in that my diagnosis of Chronic Inflammatory Demyelinating polyneuropathy (CIDP) was confirmed.  Which meant that I was able to access treatment – IVIG infusions.  I’ve already had my first month’s infusions.  I will have my second infusion in two weeks.

Once diagnosis is confirmed, things move quickly.

It’s too early to tell if IVIG is helping. My neurologist told me to give it six months of infusions before we assess whether its helping.

The problem is my biopsy showed long-standing disease. And ‘significant’ disease.  So while I believed the diagnosis was correct, it was a shock to find I had severe disease.  I didn’t expect that.

It was a shock.  And it knocked me around, emotionally. 

Severe, long-standing disease is less likely to improve.  Those are the facts.

My neurologist was very honest with me, for which I am very grateful.  He believes having realistic expectations is essential.  And he told me that while the studies he gave me to read showed a success rate of 70%, in his experience, the success rate of IVIG is more like 50%.  But because I have long standing disease, my odds are less than that.  He didn’t wish to speculate on what my actual odds of significant improvement are, he just wanted me to be realistic and well informed.

I told him I would hope for the best, while understanding that the odds were only so-so.  That I would focus on being positive about IVIG, and not make any judgement calls until six months have gone by.

He told me even after six months, he was not going to give up.  I am on a moderate dose, he said he will increase the dose and add other treatments at six months.  He made it clear he was not going to give up or abandon me if IVIG did not bring success.

He’s a great neurologist. Realistic, but also empathetic and approachable. Happy to answer my questions.

I wish I’d seen him eight years ago.

My current neurologist is my fourth neurologist. 

The first neurologist had a lumbar spine MRI that showed nerve root hypertrophy, and a lumbar puncture that showed moderately high protein in my cerebral spinal fluid.  These are both indicative, but not diagnostic, of CIDP.  It was enough that he should have gone looking for more.  It was enough that he should have known there WAS a neurological disease process going on.

Because my brain MRI was clear, and there were no oligoclonal bands, he declared these studies ‘normal’. Because they did not indicate MS.   He was only interested in MS, and so he ignored the high protein, and barely glanced at my spinal MRIs.  And dismissed me.

The second neurologist, a year later, had these studies as well.  He also dismissed me because it was not MS.  He blamed my symptoms on my arthritis, even though I told him very clearly this was NOT arthritis. Both these neurologists only cared about brain disease. Clearly they didn’t  even consider the peripheral nervous system, of which CIDP is a disease of.

Both should have been able to diagnose me.

But they thought I was malingerer.  A hysterical female. A ‘chronic painer’.  It was psychological as far as they were concerned.

I consulted the third neurologist about three years ago, when the peripheral neuropathy became much more severe. It climbed to my hips and shoulder.  It was excruciatingly painful some days. Walking became agonising. 

And then the muscle weakness became pronounced. I could not get up from a chair without help.  I could not walk up stairs anymore. My legs were too weak.

My legs ARE too weak.

This was a serious escalation in symptoms. My rheumatologist and my second neurologist were bouncing me back and forth, back and forth.

“Not my problem, go see your neuro”.

“it’s not neurological, go back to your rheum!”

For months and months.

I learned there’s a name for this – diagnostic overshadowing.  Where the doctors blames new symptoms on an existing disease or psychological disease.  They are blinded by this bias and don’t go looking for new diagnosis.

But I was getting worse by the day, so I consulted neurologist number three.

He gave me a cursory five-minute exam, spoke at 15 thousand words per minute and told me I had functional neurological disorder.

I did not have functional neurological disorder.  I met none of the criteria.

Coming from this doctor ‘Functional neurological disorder’ meant ‘it’s all in your head’ or ‘you’re a nutjob!’

He also added ‘drug seeker’ to that list, when he learned I am on long term opioid therapy.

You would think that a doctor, upon seeking long term opioids, would assume they are dealing with a person who lives with severe, disabling pain.

But they don’t assume that.  They assume ‘drug seeker’.

I gave up.  And my muscle weakness progressed.  And the pain became constant and severe.  I was unable to exercise, because even mild exercise caused a major increase in symptoms.  Literally being unable to walk, unable to get out of bed for two days after a light workout.

Finally, after a particularly rough night of agonising pain, I saw my GP and cried in her office for the pain.  She encouraged me to try ONE more neurologist.  She promised this guy is REALLY good!

I owe my GP a lot of thanks, and I told her so.  I had given up. This neurologist WAS good. He believed me.

I thanked him profusely for believing me. 

He told me there was something authentic about me.  And my story was almost textbook for CIDP. Even though my nerve conduction studies were barely abnormal. 

He knew there was something wrong, and it was not psychological.

He believed me. 

But there was a complication:  neurologist number three was his boss. Neurologist number three tried to convince neurologist number four that there was NOTHING wrong with me.  Which gave neurologist number four pause.  My nerve biopsy was held up for several months while he considered neurologist number threes opinion that I was a faker and a time waster.

But finally, neurologist number four decided to go ahead with it.  Over neurologist number three’s protestations.

Neurologist number three’s reputation depended on me being a malingerer or hysterical woman.  Or a drug seeker.

Neurologist number three completely missed the diagnosis.  Had he believed me, I would be in much better shape now. I would most likely not have severe, long-standing disease.

I would have a much better shot at improving with IVIG therapy.

That’s what misdiagnosis, and/or a doctor NOT believing a patient causes.

That’s the price the patient pays when a doctor does not do their job well.

Wasted time. 

Disease progression. 

And a much lower chance of improvement, remission or even cure.

Almost every disease is more treatable if caught early.  Neurologist number three cost me three years. Neurologist number one and two cost me eight years.

What if they had done their jobs properly, done their jobs well, and NOT dismissed me as hysterical, malingering, a ‘chronic painer’, or a drug seeker?

What would my life look like now? 

Much better, obviously. 

Would I be disabled?  Certainly not THIS disabled. Would I be in constant severe pain?  Doubtful.  Had I started treatment three years ago would I be in remission now? Possibly.  50/50.

These thoughts are pointless, I know this.  Its also impossible NOT to think about it.

I cannot turn back time and insist those doctors take me seriously.  In truth, a patient cannot MAKE a doctor listen, cannot MAKE a doctor believe. Cannot MAKE The doctor order the appropriate tests.  If a doctor dismisses the patient, there is nothing the patient can do.

Except get a second opinion. And a third. And a fourth.

With every new consult the patient starts to look like a doctor shopper. A malingerer.  Definitely hysterical.  Constantly looking for that diagnosis.

With every new consult, a correct diagnosis gets less and less likely, because of the history stacked up behind.

Neurologist number four is truly an excellent doctor.  I am so very grateful he did his job well.  I’m so grateful he saw something ‘authentic’ in me.

Its just a shame not all doctors do their job well. Nor do they realise the cost to a patient of them having a bad day, or deciding the patient is not telling the truth.

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WITH OUR CURRENT CAMPAIGNS

Sign up to receive information on our campaigns, including stopping the forced opioid tapers, rebutting the false narratives and flawed science promoted by the media, some universities and politicians, and even raising awareness amongst our peak bodies who are suppoed to be fighting for us!

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