Old 04-08-2010, 03:16 PM #1 (permalink)
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Default PLS diagnosis . . . wrong?

I have been dealing with symptoms since 1999/2000. For awhile I couldn't seem to convince a doctor that there was something wrong (leg weakness, irregular gait). But, because none of the signs were obvious none of the doctors took me seriously. Finally, after 2 brain MRI's, 1 spinal MRI, an EMG, and a nerve-conduction study, I went to a doctor who believed me and diagnosed me with Limb-Girdle Muscular Dystrophy in 1/2005. When he heard that my husband was retiring (Air Force) he said I needed to find a neurologist here in NE for my follow-ups. When I went to my doctor here, after the "dog and pony show" which showed much more progression, she stated that she didn't agree with that diagnosis. After another brain/spinal MRI with contrast, a spinal tap, another EMG, another nerve-conduction study and lots of blood tests, my doctor still couldn't figure it out and sent me to the Professor of Neurology at the University of CO. He stated, with no hesitation, that it was PLS in 9/2009. But now I'm wondering if that was correct.
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Old 04-08-2010, 08:40 PM #2 (permalink)
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Default Re: PLS diagnosis . . . wrong?

Hey, Valrunk...
Since YOU are the one IN your body, you can tell exactly what's goin' on, but not exactly what it is. I have bulbar onset PLS...but it took a while for it to be exactly diagnosed. Many mndiseases mimic each other(even Lymes Disease) and you may have to do some research on your own and see which one more closely matches your symptoms. But if you continue to experience new symptoms you may have to change your final conclusion. Of course, keep track of whats going on and tell your neuro next time...keep a log.
When you click on als/mnd support group forums(to find this PLS site) you will notice some other discussions for other neuro diseases and many of those different sites will have a certain mndisease whose name and symptoms you can look up. You may also go to the National Institute of Neurological Disorders and Stroke(NINDS) ....and do some research...there are many other sites, too.
Do you know for certain if your LEGS are weak or is it your HIPS? Have your doctor write a perscription to have a physical therapist go over you to test to see what exactly is weak and what remains strong.
ANYWAY, I would recommend doing further research on your own and discussing your findings with your doctor.(I had a second opinion done also at Johns Hopkins in Baltimore, MD)
God Bless You and Assist you in your research! Diane
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Old 04-09-2010, 09:20 AM #3 (permalink)
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Default Re: PLS diagnosis . . . wrong?

Thanks for the info.! I will investigate further.

On a totally different note, the neurologist I was going to that diagnosed LGMD was in Portsmouth, VA. We lived in Hampton, VA for about 4 years.
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Old 04-09-2010, 01:55 PM #4 (permalink)
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Default Re: PLS diagnosis . . . wrong?

I have read that MOST of the people on this site are "bulbarians". The only thing that has been affected on me are my legs. I know that this is a progressive disease, but I've been suffering from these symptoms (granted, they are getting worse) since
1999/2000. Not that I WANT my symptoms to progress upward but . . . .
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Old 04-09-2010, 03:51 PM #5 (permalink)
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Default Re: PLS diagnosis . . . wrong?

I don't think that most of the people on this site are bulbarian as there are lots of limb onset members but many of us who can't talk well anywhere else are just more talkative here.
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Old 04-09-2010, 04:36 PM #6 (permalink)
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Default Re: PLS diagnosis . . . wrong?

Did they look into HSP that could be somehting to look into.. Genetic, and often misdiagnosed. as PLS..
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Old 04-09-2010, 04:59 PM #7 (permalink)
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Default Re: PLS diagnosis . . . wrong?

I share the PLS diagnosis and have my doubts, too. It is much rarer than ALS which makes it hard for me to believe it could have landed on me.

I'd be asking a lot of questions, particularly:

1. Doctor, why do you think this is PLS?

2. How certain are you of this conclusion?

3. What have you ruled out and why?

4. Where do we go from here?
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Old 04-11-2010, 07:30 AM #8 (permalink)
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Default Re: PLS diagnosis . . . wrong?

hi valrunk.
most cases of pls are leg onset,bulbar onset is rare.
i agree with hoping,with little progression from your legs in 10yrs it sounds more like hsp.
i too began with leg symptoms in 1999 but over the years the symptoms have progressed upwards to now involve bulbar.......classic progression for pls.
i had genetic testing including for hsp but nothing showed up.
like you i had several years of testing,ms was a big possibility then after developing syncopes(hypotention blackouts) multi system atrophy was concidered but mri's were always ok.
pls is never a certain diagnosed,it can only be pathologically proven on autopsy.
they can only go by clinical signs and symptoms plus progression.
next time you see your neuro ask about hsp and genetic testing.
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Old 04-11-2010, 10:02 AM #9 (permalink)
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Default Re: PLS diagnosis . . . wrong?

When I was first got the PLS diagnosed, I came home and did some research on it. I found that I SEEMED to have more of the symptoms for HSP, but I wasn't sure. I had genetic testing previously when I was diagnosed with LGMD in VA. Maybe the doctor in CO already looked at them. I hope that they included whatever it was he needed to know 'cause I heard they were REALLY expensive . . . had them done for free previously since my husband was in the military and I was seeing a military neurologist. I'll have to ask my doctor in CO how he arrived at this diagnosed, I guess.
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