Old 01-31-2010, 10:14 PM #1 (permalink)
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Question Have I been misdiagnosed with PLS?

I had an EMG a month ago. My family doctor had referred me to a neurologist because she was concerned with some unexplained falls which resulted in fractures.

I knew that I had become more clumsy (and I seemed to have less balance walking in the dark) but I attributed that to having shattered my kneecap a few years earlier.

As soon as the test was completed the neurologist said that I have PLS. The results apparently were definitive and yet on these forums people seem to say that an EMG doesn't actually diagnose PLS. It sounds as if PLS is only diagnosed by excluding other diagnoses.

I had a normal MRI about 5 months earlier and I must say that I thought that was the end of it. The EMG was only to tie up loose ends, I thought. I was totally surprised when this diagnosis was made. Is my left leg weak or is it because of the severe fracture I'd had?

My question is - how could I not have realised this before? or could this be a simple misdiagnosis? I go back to the neuro clinic in a week to see a multidisciplinary team and get another blood test for Lyme disease.

Since the diagnosis I have swung between noticing symptoms that I have never felt before and then feeling that absolutely nothing is wrong with me!
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Old 01-31-2010, 10:28 PM #2 (permalink)
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Default Re: Have I been misdiagnosed with PLS?

Northern Dancer,

I have been diagnosed with PLS for over a year now [12/2008] and can tell you that there have been a few days when I've been symptom free. My usual day is filled with leg cramps and spasticity.

The EMG will detect lower motor neuron trouble whereas upper motor neuron problems are noted by clinical observation (i.e. spasticity, Babinski & Hoffman signs, hyperreflexia). Your neurologist must have come to the conclusion you have PLS by ruling out things like MS, lupus, ALS, neuropathy, myopathy, etc, etc, etc.

PLS is no picnic. If your diagnosed is correct, you will be monitored for the next few years for any lower motor neuron involvement - in which case the diagnosis would change to ALS.

Zaphoon

Last edited by Zaphoon : 01-31-2010 at 10:29 PM Reason: typo
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Old 01-31-2010, 10:44 PM #3 (permalink)
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Default Re: Have I been misdiagnosed with PLS?

I spent approximately 10 minutes with the doctor before she announced the diagnosis so I am baffled by the speed at which she could have ruled out those others conditions.It was our first meeting as another neurologist had sent me for the test.

No blood work had been done and she had not seen my MRI results. The only thing she had was a brief history of my falls and what she saw on the EMG monitor. She just suddenly said, " That's not normal. I know what you have but not why. You have primary lateral sclerosis." This just wasn't diagnosed by elimination. What ever she saw seemed to clinch it. I should trust her, I know, as she is the head of the research team.
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Old 01-31-2010, 11:05 PM #4 (permalink)
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Default Re: Have I been misdiagnosed with PLS?

Northern Dancer,
I agree with Zaphoon, I am also diagnosed with PLS about the same time as he, but comming from app 12 months of a diagnosed of MS.(that was a 10 min visit)

I had the full range of tests to rule out other thigs and PLS was left.
( I spent 3 days in Hospital having tests done and met with a group of nero's (ended up being guest speaker for their Friday team meeting)for about 60 min. (guess PLS is not a diagnosed they give out often "down here")
so your 10 min seems to me a bit quick for a PLS diagnosed, but i am no doctor.

As Zaph said PLS is no picnic but it is better than some MND around.

Strange as it might seem I hope you get a positive result from the Lyme test as there are treatments for this out there.

Cheers
Peter

Last edited by peter57 : 01-31-2010 at 11:06 PM Reason: I agreed with Zaph, twice, almost time for a Monday tipple i think
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Old 01-31-2010, 11:07 PM #5 (permalink)
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Default Re: Have I been misdiagnosed with PLS?

Well, I'm a little baffled. Usually, there is a lot of blood testing done to check for things like thyroid levels, diabetes, syphilis, lymes, etc. The MRI would usually rule in or out MS but not always. The neurologist will often order multiple mri's to cover brain, T-spine and C-spine.

I think you should get checked by a certified ALS/MDA clinic. My question for your current doctor(s) would be "How did you come to the conclusion I have PLS? What did you rule out in the diagnostic process and why?"

Okay, that was 2 questions but you get my drift.

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Old 01-31-2010, 11:25 PM #6 (permalink)
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Default Re: Have I been misdiagnosed with PLS?

My MRI included brain and upper and lower spine. I have no Babinski or Hoffmann signs. If there is any spasticity I am blissfully unaware of it. It just might be that this has come on very gradually and I haven't processed the changes.

Thanks to you for your swift responses.
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Old 01-31-2010, 11:30 PM #7 (permalink)
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Default Re: Have I been misdiagnosed with PLS?

Forgot to mention that the tests were done at the Montreal Neuro and the MD is the head of the ALS/MND research team. After only one visit I can say that everyone was very supportive and I am sure I will get the best care there. Most thankful for our medicare system!
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Old 01-31-2010, 11:34 PM #8 (permalink)
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Default Re: Have I been misdiagnosed with PLS?

Once again I agree with Zaph.

(I have got to stop this )


Ask the questions

cheers
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Old 02-01-2010, 04:26 PM #9 (permalink)
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Default Re: Have I been misdiagnosed with PLS?

After doing a bit of research today, I am guessing that what I really have is HSP. It just makes more sense.

Will certainly question the MD next week. Perhaps the results of the DNA tests done last month will shed some light on this.

ND
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Old 02-01-2010, 06:32 PM #10 (permalink)
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Default Re: Have I been misdiagnosed with PLS?

PLS is a very rare disease. The incidence rate is about 1% of ALS which translates to 1-2 people per 10,000,000 per year or 35-70 people per year in the US. The diagnosis takes months even for an expert in MND. I have Bulbar onset PLS which is a rare form. Usually it takes 3 years from onset to rule out ALS. I think something is going on here. Maybe the Dr. is trying to get the MND patient count up for some reason. It is slow progressing so it could take years before other PLS symptoms show up.
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Old 02-01-2010, 07:39 PM #11 (permalink)
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Smile Re: Have I been misdiagnosed with PLS?

Billbell,
The falling started at least 10 years ago. The imbalance and gait problems have been around for almost 2 1/2 years. The only reason my GP referred me to a neurologist was because with the last 4 falls I have fractured bones badly enough to require surgery.

I wasn't looking for a diagnosis so no investigations were done before. I just accepted the fact that I was clumsy. Looking back, yes, my thighs went into spasms if I got into a cold car and my legs seemed very stiff when I was at an outdoor spa in minus 7 degrees C. but that's Canada in the winter! Perhaps I have minimized other symptoms as well.

Can't see any reason for the neurologist ( yep, an expert in MND ) to want get the MND count up. There is already a high incidence of MS alone in this province ( attributed to less sunlight year round ) Also healthcare is free here no one hesitates to seek medical care.

Anyhow, thanks for your input.

ND
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Old 02-01-2010, 11:36 PM #12 (permalink)
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Default Re: Have I been misdiagnosed with PLS?

I believe there is a genetic test that can be done to determine HSP.
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Old 02-02-2010, 02:50 PM #13 (permalink)
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Default Re: Have I been misdiagnosed with PLS?

Top clinic or not, I'd be asking for a second opinion.

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Old 02-02-2010, 08:08 PM #14 (permalink)
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Default Re: Have I been misdiagnosed with PLS?

ND, please ask more questions...the diagnosed seems quite quick. My husband had to have MS ruled out via a series of MRIs over a 2.5 yr period, then genetic testing to rule out HSP, several blood tests to rule out lymes disease, spinal puncture, etc, etc, 4 yrs later we now have a diagnosed.
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Old 02-02-2010, 10:46 PM #15 (permalink)
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Default Re: Have I been misdiagnosed with PLS?

Just J,
Can you give me an idea of some of the symptoms that made your husband see a neurologist in the first place? My symptoms are so subtle ( to me!) that I have always dismissed them as being in my imagination. I was able to rationalize even the falls. Walking too fast, sidewalk was icey,etc.

Next Monday I will ask what exactly points to the diagnosis of PLS. The clinic is part of the corticospinal research unit so I am confident that all the resources I need are there. Regardless, I am aware that the treatment is supportive only so there is no need to rush, I guess.

Thanks for the info.
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