Re: Re: Time to diagnose PLS

[Guest guest]

If you ignore the time I had to wait before I could have an MRI and then get

the results my diagnosis of PLS only took a matter of days. In 1993 when I

mentioned my general stiffness to my family doctor he sent me straight off

to a neurologist. The next day I was sitting in the neuro's office while he

had me perform various movement tests for him. He also booked me in for an

MRI for which I had to wait in the queue about three weeks for. I then had

to wait about another week for the neuro to receive the results.

Basically when back for that next appointment with the neuro he told me

straight away that PLS was the diagnosis. That seemed to be primarily based

on the MRI which showed 'gliosis or edema in the corticospinal tract' . In

conjunction with my physical symptoms it apparently seemed pretty much an

open and shut case.

As most people do in these circumstances I wanted a second opinion. Next

step was off to see reputedly the best neurologist in Melbourne. He had

been sent my MRI scans and results so when I saw him he had me perform

pretty much the same movements as the first neuro, referred to my MRI

results and said " Yes, it's PLS " . End of story.

Admittedly when I next went back to see him (about two years later) my

symptoms were noticeably worse but a second MRI showed no real difference.

He then seemed to cast a slight doubt on the diagnosis of PLS but was still

fairly sure that's what it was.

Since then he has retired so I have begun going to a hospital nearer home

which specialises in neurological conditions. I think I am possibly the

person with PLS they see but over the years they have worked with many

people with ALS and MS. One of the neurologists there tended to cast

aspersions on the MRI saying something like 'they can make pretty much

anything light up if they try'. He describes my condition as 'some sort of

motor neurone disease' but won't really commit to calling it PLS.

Thomson wrote:

> Technically, I don't believe it is possible to diagnose PLS after 1

> year of symptoms. If you read Dr. Carmel Armon's page on PLS it

> explains why.

.

,-._|\ Covington

/ Oz \

\_,--.x/

v

[Guest guest]

Hi ,

It's nice to have the time to get back on as it has been hectic over here

for the last few months. On July 1 Australia underwent a major structural

change to its taxation system and this required a substantial rewrite of

parts of most computer systems throughout Australia. Many of the systems

the company I work for support (basically for the Australian arm of GM)

required rework and as it was an absolutely unmovable, government set

deadline we just had to get it all done by July 1 no matter what. I worked

(from home) many weekends and nights over the past few months, especially

during June. I finally feel like I've caught up on myself. 8-)

I can understand the reticence of the medical fraternity to diagnose

something as PLS until they're fairly sure it isn't ALS, but rather than

being left in limbo for years I think most people would rather be told they

had PLS and if lower neurones become involved later then the diagnosis could

be changed to ALS. At least then they have something to target and do

research on, join groups like this etc..

In my case as well as predominantly upper neurone symptoms I have also had

minor lower neurone symptoms for probably five years now. I have some

muscle wasting between my thumbs and forefingers but that hasn't seem to

have progressed for several years now. From time to time I used to also

have fasciculations, which I understand are usually considered to be

symptoms of lower neurone involvement.

Several years ago when my speech was still understandable I communicated

with Dr Prahl, firstly by mail and then by phone. I know that the subject

of Dr Prahl divides people here so I won't go into that except to say I sit

somewhere a little to the positive side of the fence. He said that from his

experience we would describe my case as somewhere on the spectrum between

PLS and ALS, if you like probably an atypical case of ALS. I think that

this is a reasonable definition given what I have learned over the past few

years about PLS/ALS.

As far as I am aware what I had done was an MRI, not an MRS and in fact when

I had the first one in 1993 the MRI unit had only been installed in the

hospital a few weeks earlier. I have come to the understanding that very

few people diagnosed with either ALS or PLS show anything on an MRI so in

that sense (and many others?!?) I am unusual.

Thomson wrote:

> Hi ,

> Good to hear from you. I think the reason they don't usually make a

> PLS diagnosis so soon is the dreaded black cloud of ALS hanging over

> all of us for the first few years. Anyway that is how my neurologist

> sees it. After 4 to 5 years without developing significant lower

> motor involvement he feels confident in making a firm PLS diagnosis

> but cautions that there is still not a 100% guarantee. I guess ALS

> can act like PLS in the early stages but for most PALS it is such a

> short period of time it doesn't seem significant. I think that is

> why they are doing the NIH study every one is involved in, to

> document that time period. It will be interesting to see what comes

> of it. Was your MRI a standard one or the MRS (spectrum)? I had the

> MRS done and it shows early changes consistent with PLS but nothing

> showed on the regular MRI. My neuro also told me that occasionally

> it will show on regular MRI but not very often. He thinks eventually

> all PLSers will show changes on the MRS but some don't show until

> later in the progression. Does anyone know if ALS shows the same

> thing on MRI or MRS?

>

.

,-._|\ Covington

/ Oz \

\_,--.x/

v

[Guest guest]

My diagnosis took about 2 years ... and ALS was suspected and ruled out

more than once with EMG's (electromyogram) - also don't have the muscle

wasting that goes with ALS (due to loss of lower motor neurons). (I am

surprised that a dr would just wait 4 -5 years to rule out ALS). Ruled out

cervical disk problems with MRIs, myelograms, and CT scans. They thought it

might be MS, but tests (including visual evoke response) and MRIs (no

visible plaques) made MS unlikely. Also had somatosensory tests more than

once. Finally saw a doctor at Univ of Ala at Birmingham (world-renowned

expert on MS) who dianosed PLS. (Before that, one dr did mention in passing

some apparent atropy/shrinkage in pyramidal tracts in the C3-4 area ... the

two pyramidal tracts are where the upper motor neurons pass down thru the

spinal cord - they are interior to the cord and so problems with spasticity

and excessive reflexes without pain and numbness (nerves which pass along

the outside of the cord) can rule out pressure from bulging or ruptured

disks.)

Roy

[Guest guest]

,

You wrote:

>MRS done and it shows early changes consistent with PLS but nothing

>showed on the regular MRI. My neuro also told me that occasionally

>it will show on regular MRI but not very often. He thinks eventually

>all PLSers will show changes on the MRS but some don't show until

>later in the progression.

Could you please describe specifically what " early changes consistent with

PLS " were seen on the MRS?

Thanks,

Roy s