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

[Guest guest]

Hi

I gather i am correct in calling you an aussie?? your cool sign off

with the map of Oz gives it away. I am a fellow aussie in Sydney.

So far you hold the record for the quickest diagnosis. One month!!

WOW!! I have had 4 MRI's and they have showed up nothing plus

numerous other tests that all show that i have nothing wrong with me.

Only test that i havent had is the Spinal Tap (oh that gives me the

shivers) I have refused to have it done, firstly because i have heard

and read terrible things about it, secondly, I have been told that it

is mainly done to rule out MS and since i dont have MS, I dont see any

reason to have it. Also none of my 2 of my 4 neuro's have not pushed

me to have it and the other 2 have not even mentioned it.

I am sorry to hear that you have lost your speech and most of your

mobility. My symptoms began 9 years ago but began in ernest 7 years

ago. My speech problems began last year but after starting on

baclofen it has been corrected. I am interested to know when your

speech involvement began and if you are on baclofen.

Best wishes

Maureen

> 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 would like to apply for that position.

I first recognized that something big was wrong with my gait on the Thursday

before Good Friday in 2003. The following Monday, I saw my GP, Dr. Hyder.

He immediately referred me to Dr. Hassan Hassouri, a Neurologist at UPMC

(The University of Pittsburgh Medical Center) who I saw the following day,

Tuesday. That morning after an extensive office exam, he told me that he

suspected that I had a rare disease called PLS, six days after I first

became aware of my symptoms.

A series of all of the tests that we all have enjoyed, proved Dr. Hassouri

correct. His opinion was subsequently confirmed by Dr. Fink at The

University of Michigan.

I am entirely fortunate to have the opportunity to be seen by these two

excellent Neurologists and a GP who had the insight to act with knowledge

and speed. I will be forever grateful to them and I hold all three in

highest regard.

Gene

[Guest guest]

Hi Maureen! I want to jump in here about the spinal tap. It is done to

check for MS but the bands they find in the spinal fluid may be there even

if the MRI is negative (not often but sometimes) there are also some rarer

conditions that might be picked up. Also, the discomfort of the tap is

often related to the experience of the person doing it. I have had four

taps - two done with no pain meds including the local usually given and I

can honestly say they weren't that bad. In fact the worst one was with

novacaine and the discomfort was in the area being numbed. If your docs

don't push it it's probably ok not to do it but the test is often a piece

of cake. Lavon

At 11:31 PM 7/17/2004, you wrote:

>Hi

>

>I gather i am correct in calling you an aussie?? your cool sign off

>with the map of Oz gives it away. I am a fellow aussie in Sydney.

>

>So far you hold the record for the quickest diagnosis. One month!!

>WOW!! I have had 4 MRI's and they have showed up nothing plus

>numerous other tests that all show that i have nothing wrong with me.

> Only test that i havent had is the Spinal Tap (oh that gives me the

>shivers) I have refused to have it done, firstly because i have heard

>and read terrible things about it, secondly, I have been told that it

>is mainly done to rule out MS and since i dont have MS, I dont see any

>reason to have it. Also none of my 2 of my 4 neuro's have not pushed

>me to have it and the other 2 have not even mentioned it.

>

>I am sorry to hear that you have lost your speech and most of your

>mobility. My symptoms began 9 years ago but began in ernest 7 years

>ago. My speech problems began last year but after starting on

>baclofen it has been corrected. I am interested to know when your

>speech involvement began and if you are on baclofen.

>

>Best wishes

>Maureen

>

>

> > 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]

Hi Maureen,

Yep, live near Melbourne, hence the x on my map. Speech involvement

probably started about a year after diagnosis when I found I was having

problems saying certain words as my tongue wouldn't go where it was

meant to on certain combinations of consecutive syllables. By about 4

or 5 years after diagnosis only basically my family could really

understand me. Tried Baclofen for a while and found it zonked me a bit

- bad for work as my job requires a functioning brain, so no longer use it.

Cheers,

Maureen wrote:

> Hi

>

> I gather i am correct in calling you an aussie?? your cool sign off

> with the map of Oz gives it away. I am a fellow aussie in Sydney.

>

> <snip>...........

> I am sorry to hear that you have lost your speech and most of your

> mobility. My symptoms began 9 years ago but began in ernest 7 years

> ago. My speech problems began last year but after starting on

> baclofen it has been corrected. I am interested to know when your

> speech involvement began and if you are on baclofen.

>

> Best wishes

> Maureen

--

.

,-._|\ Covington

/ Oz \

\_,--.x/

v

[Guest guest]

You can have it - pay and conditions are crap! :-)

Seriously, that's a very fast diagnosis!

Eugene A. Secor wrote:

> I would like to apply for that position.

>

> I first recognized that something big was wrong with my gait on the

> Thursday

> before Good Friday in 2003. The following Monday, I saw my GP, Dr. Hyder.

> He immediately referred me to Dr. Hassan Hassouri, a Neurologist at UPMC

> (The University of Pittsburgh Medical Center) who I saw the following day,

> Tuesday. That morning after an extensive office exam, he told me that he

> suspected that I had a rare disease called PLS, six days after I first

> became aware of my symptoms.

--

.

,-._|\ Covington

/ Oz \

\_,--.x/

v

[Guest guest]

---Gene, what a quick diagnosis. It took 15 years and many tests for

me to get one. That was back in 1999. I walk with a walker or cane

in the house and my walker if alone outside. Carolyn In PLS-

FRIENDS , " Eugene A. Secor " <marslites@m...> wrote:

> I would like to apply for that position.

>

> I first recognized that something big was wrong with my gait on

the Thursday

> before Good Friday in 2003. The following Monday, I saw my GP,

Dr. Hyder.

> He immediately referred me to Dr. Hassan Hassouri, a Neurologist

at UPMC

> (The University of Pittsburgh Medical Center) who I saw the

following day,

> Tuesday. That morning after an extensive office exam, he told me

that he

> suspected that I had a rare disease called PLS, six days after I

first

> became aware of my symptoms.

>

> A series of all of the tests that we all have enjoyed, proved Dr.

Hassouri

> correct. His opinion was subsequently confirmed by Dr. Fink

at The

> University of Michigan.

>

> I am entirely fortunate to have the opportunity to be seen by

these two

> excellent Neurologists and a GP who had the insight to act with

knowledge

> and speed. I will be forever grateful to them and I hold all

three in

> highest regard.

>

>

> Gene