Re: How long did it take for you to be diagnosed

[Guest guest]

I was dx after two years. The doctor I have in alabama is one of the

few that woeks with cases of PLS. He did test to rule out ALS and the

others and after 2 years he said that I had PLS. The said to go to

the internet where I would find answers to most of my questions then

put me on Baclofen. I was luckey to find this group as this is where

I do find most of my answers.

> Hi all

>

> I have stated that i have either HSP or PLS but i have been

incorrect

> in saying that. 3 neurologists have only given me a diagnosis of

> Spastic Paraplegia with Startle Myoclonus which as i understand it,

is

> not a diagnosis but symptoms of a disorder. The 4th neuro came up

> with HSP or PLS but he is stumped with me as i dont clearly fit in

> with either one. but he has said that it is more likely HSP as there

> are 23 different varieties. My symptoms began 9 years ago and saw

my

> first neuro 7 years ago (who like Lana here, told me to see a

> physchiatrist). You would think that i would have a diagnosis by

now.

> I am using a walker now outside the home and speech problems began

> 1.5 years ago but have been corrected by taking baclofen. So my

> question to the people here is, how long after symptoms began did

you

> receive a firm diagnosis? and are there any people here, like me,

who

> are still waiting to be diagnosed?

>

> thanks

>

> maureen

[Guest guest]

Hi Maureen,

Around 8 years ago I was first diagnosed with M.S.I went through the shots and

even chemotherapy for M.S. I just contiually got worse, so my Neuro sent me to a

specialist, that put me through all those tests again, she stated that I dont

have M.S I indeed have PLS. So after getting used to the fact that I had M.S for

7 years, now I have to deal with another diagnosis. Hey at least I am still

being able to walk and talk. Original Message -----

From: Maureen

To: PLS-FRIENDS

Sent: Saturday, July 10, 2004 5:34 AM

Subject: How long did it take for you to be diagnosed

Hi all

I have stated that i have either HSP or PLS but i have been incorrect

in saying that. 3 neurologists have only given me a diagnosis of

Spastic Paraplegia with Startle Myoclonus which as i understand it, is

not a diagnosis but symptoms of a disorder. The 4th neuro came up

with HSP or PLS but he is stumped with me as i dont clearly fit in

with either one. but he has said that it is more likely HSP as there

are 23 different varieties. My symptoms began 9 years ago and saw my

first neuro 7 years ago (who like Lana here, told me to see a

physchiatrist). You would think that i would have a diagnosis by now.

I am using a walker now outside the home and speech problems began

1.5 years ago but have been corrected by taking baclofen. So my

question to the people here is, how long after symptoms began did you

receive a firm diagnosis? and are there any people here, like me, who

are still waiting to be diagnosed?

thanks

maureen

[Guest guest]

I got a diagnosis pretty quick. As a matter of fact, I may even hold the

record for being rapidly diagnosed with this stuff. I first saw a general

type doctor, who sent me to a neurologist, who did some tests (including

X-rays and MRI scans) and when he said he was puzzled, I got sent right to

the chairman of neurology at the University of Virginia School of Medicine.

He did some more tests and stuff, and then I got a diagnosis, which has

since been re-confirmed oodles of times. The whole process took less than

a year, unlike many of the stories you will hear. I must confess however,

that at the time I worked for that same medical school, and that the MRI

was almost just across the street from where I worked. Shoot, I could

leave work, have some scans or something done, and be back at my desk in

under an hour.

--

Galen Hekhuis NpD, JFR, GWA ghekhuis@...

We are the CroMagnon of the future

[Guest guest]

I too am in this position.  Spastic paraplegia (quadriplegia?)  is  what

the   neuros will write down  if asked. However when I saw Talbot  in

the UK  he told me he thought  I  fitted PLS. I have  deteriorating 

movement   in my legs, fingers and also speech problems. Startle reflex,

hyperactive reflexes,   some drooling at   night  and   deformed feet.

One neuro thought that my feet indicated  that this has  been progressing

for a long time. Talbot indicated PLS  is more likely because of the

speech    involvement.

I think  they are all  just being  cautious  of a  definite diagnosis. 

I've  been seeing them for about 3 years now but symptons started about 6

years ago.

 

Myself I'm convinced its PLS. I   think  that Doctors  down this part of the

world maybe don't see as  much PLS.

 

I've grown to accept this  uncertainty as a positive thing at this point and

just keep hoping for slowing progression.

 

Regards

Kiwi

How long did it take for you to be diagnosed

Hi all

I have stated that i have either HSP or PLS but i have been incorrect

in saying that.  3 neurologists have only given me a diagnosis of

Spastic Paraplegia with Startle Myoclonus which as i understand it, is

not a diagnosis but symptoms of a disorder.  The 4th neuro came up

with HSP or PLS but he is stumped with me as i dont clearly fit in

with either one. but he has said that it is more likely HSP as there

are 23 different varieties.  My symptoms began 9 years ago and saw my

first neuro 7 years ago (who like Lana here, told me to see a

physchiatrist).  You would think that i would have a diagnosis by now.

I am using a walker now outside the home and speech problems began

1.5 years ago but have been corrected by taking baclofen.  So my

question to the people here is, how long after symptoms began did you

receive a firm diagnosis?  and are there any people here, like me, who

are still waiting to be diagnosed?

thanks

maureen

[Guest guest]

Maureen,

I had symptoms that were serious enough to see a physician back in

about 1996. The symptoms were hip pain, lack of balance on my feet

and minor leg weakness. I was diagnosed with PLS in 1998.

My diagnosis remains a " working diagnosis " . This means that if

symptoms change, so will my diagnosis. Nonetheless, after 6 years

of the same (but progressively worse) symptoms, it is very unlikely

that any new symptoms will arise in my case--according to my

neurologist.

Typically, but not always, PLS includes speech problems. Some

neurologists insist that there must be speech problems to have a PLS

diagnosis. Others disagree.

In a year or 2, new diagnostic criteria for PLS will be published.

(Thanks to Thomson, Gentner, Thurza and

Dixson who worked for 2 years to help organize the PLS

Conference help early this past June in Santa Cruz, CA.) Once the

new criteria are published, neurologists will be able to classify my

symptoms more accurately. And there won't be any more disagreements

about whether speech problems are required for a final PLS diagnosis.

Until then, I wait for the final word on my diagnosis.

Mark

> Hi all

>

> I have stated that i have either HSP or PLS but i have been

incorrect

> in saying that. 3 neurologists have only given me a diagnosis of

> Spastic Paraplegia with Startle Myoclonus which as i understand

it, is

> not a diagnosis but symptoms of a disorder. The 4th neuro came up

> with HSP or PLS but he is stumped with me as i dont clearly fit in

> with either one. but he has said that it is more likely HSP as

there

> are 23 different varieties. My symptoms began 9 years ago and saw

my

> first neuro 7 years ago (who like Lana here, told me to see a

> physchiatrist). You would think that i would have a diagnosis by

now.

> I am using a walker now outside the home and speech problems began

> 1.5 years ago but have been corrected by taking baclofen. So my

> question to the people here is, how long after symptoms began did

you

> receive a firm diagnosis? and are there any people here, like me,

who

> are still waiting to be diagnosed?

>

> thanks

>

> maureen

[Guest guest]

Hi Maureen,

My PLS diagnosis took a month in 1993 and three weeks of that was

waiting for the MRI appointment. Had been feeling stiff and having

problems running, so mentioned it to my GP (a great doc!). He did

various simple physical tests with me, sent me off to see a local neuro

the next day who did basically the same physical tests and then booked

me in for an MRI at a hospital which had only had their machine for a

month or two but already had almost a three week waiting list.

Went back to see the neuro about a week after the MRI. That was

probably the worst month of my life, wondering whether what I had was

some inoperable brain tumour, MS or other horrible disease. Based on my

clinical symptoms and the fact that my MRI showed abnormal signals in

the corticospinal tract he agreed with the guy who had written up the

MRI report that I had PLS. So, that was it, just under a month.

In retrospect I think it was a pretty gutsy call given all I know now,

but I also think it was pretty spot on because in the eleven years since

then I have lost my speech and much of my mobility, developed urinary

urgency and startle reflex etc and everything I have read from others

here on PLS-FRIENDS makes me confident that I truly do have PLS.

Regards,

--

.

,-._|\ Covington

/ Oz \

\_,--.x/

v

[Guest guest]

,

I seem to have lost the intense " startle reflex, " and feel good about it. I

really don't know where it went and expect it to show up when I least expect

it. The urinary frequency is getting worse. Someone once stated in this

group that it was like your brain suddenly telling you that you were

supposed to go an hour ago. Or something like that. I have been very lucky

in the mobility part. I am able to walk easily with just a four wheeled

walker and occasionally around my house, yard and office without it. I just

need it immediately when I need it. I feel like something is going right

with me and I am not progressing at all. However, my voice volume has

dropped in just the past three months and I seem like I have to force my

words out occasionally. That is getting more frequent.

Welcome to this great group of people. There are a lot of us who just read

and delete. Many of us used to respond more frequently, but now just speak

up when we feel like we have something to contribute. There is a wealth of

information here, and none from any neuros. Just us plain folk. However,

they seem to be catching on, since there seem to be more people joining this

group recently than in any three month period before. Guess the SPF and NIH

got the message out.

Keep in there and here. Let us know how you're doing and we'll do the same.

May you see better days ahead.

Mike Gray

Re: How long did it take for you to be diagnosed

> Hi Maureen,

>

> My PLS diagnosis took a month in 1993 and three weeks of that was

> waiting for the MRI appointment. Had been feeling stiff and having

> problems running, so mentioned it to my GP (a great doc!). He did

> various simple physical tests with me, sent me off to see a local neuro

> the next day who did basically the same physical tests and then booked

> me in for an MRI at a hospital which had only had their machine for a

> month or two but already had almost a three week waiting list.

>

> Went back to see the neuro about a week after the MRI. That was

> probably the worst month of my life, wondering whether what I had was

> some inoperable brain tumour, MS or other horrible disease. Based on my

> clinical symptoms and the fact that my MRI showed abnormal signals in

> the corticospinal tract he agreed with the guy who had written up the

> MRI report that I had PLS. So, that was it, just under a month.

>

> In retrospect I think it was a pretty gutsy call given all I know now,

> but I also think it was pretty spot on because in the eleven years since

> then I have lost my speech and much of my mobility, developed urinary

> urgency and startle reflex etc and everything I have read from others

> here on PLS-FRIENDS makes me confident that I truly do have PLS.

>

> Regards,

>

>

> --

> .

> ,-._|\ Covington

> / Oz \

> \_,--.x/

> v

>

>

>

>

>

>

>

[Guest guest]

I have found the stories of getting a PLS diagnosis most

interesting. Ronnie's account of so many neurologic disorders in the

area of Berkeley Springs, WV, should be followed by some researcher.

It took me less than a year for my diagnosis and I never did have an

MRI. Following a couple unexplained falls, my internist noticed a

couple abnormal reflexes. He not was not satisfied with what he

heard back from a referral to an orthopedist and he immediately sent

me to a neurologist who had all of those uncomfortable tests run and

within a week the neuro said he suspected PLS but that he would

monitor it for 6 months before a final diagnosis. A year later he

said we could definitely rule out ALS -- and I was surprised and glad

I didn't know he had not ruled that out earlier.

I must add that a couple year before the unexplained falls I had

physical therapy for sciatica, but what didn't return was the full

feeling in my left big toe. The physical therapist said something

else was going on unrelated to the sciatica. In retrospect, I

suspect that was the first " symptom " of PLS, particularly since my

degeneration has been somewhat slow paced.

Thanks for asking!

Dorothy

> Hi all

>

> I have stated that i have either HSP or PLS but i have been

incorrect

> in saying that. 3 neurologists have only given me a diagnosis of

> Spastic Paraplegia with Startle Myoclonus which as i understand it,

is

> not a diagnosis but symptoms of a disorder. The 4th neuro came up

> with HSP or PLS but he is stumped with me as i dont clearly fit in

> with either one. but he has said that it is more likely HSP as there

> are 23 different varieties. My symptoms began 9 years ago and saw

my

> first neuro 7 years ago (who like Lana here, told me to see a

> physchiatrist). You would think that i would have a diagnosis by

now.

> I am using a walker now outside the home and speech problems began

> 1.5 years ago but have been corrected by taking baclofen. So my

> question to the people here is, how long after symptoms began did

you

> receive a firm diagnosis? and are there any people here, like me,

who

> are still waiting to be diagnosed?

>

> thanks

>

> maureen