Re: How long did it take for you to be diagnosed/linda and dennis

July 10, 2004

Hi

you sound a lot like me with your syptoms. Only difference are that i

dont have deformed feet and the movement in my legs and arms and

fingers havent deteriorated in 7 years. My speech problems began last

year and i put this down to the severe stress i suffered when my

husband nearly died. I have just started on Baclofen and that has

returned my speech to almost normal. are you on baclofen. also i

drool a lot too at night but then i have always been a bit of a

drooler. I think that having our strange disorder and living in

beautiful countries with low populations does work against us.

Australia has 20 million people and NZ even less. Given that our

population is 1/10th that of the US and hearing that there are only

500 documented cases of PLS in the US (correct me someone if i am

wrong with that figure) then there maybe only 50 documented cases of

PLS in australia and less in NZ. As you say we just have to wait and

hope that our health remains stable for many years to come.

, I am very interested in seeing Dr Tablot in the UK also. can

you tell me how can i get in touch with him.

thanks

Maureen

> 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

>

July 11, 2004

Maureen

Great to read your reply. My feet are just annoying in winter. The smaller

toes have become quite curled under which means I get calluses on

these toes from rubbing on shoes. I've always had very high arches and

instep. These things get mentioned in HSP. My fingers have got slower over

the last year and clumsy so that things like buttons and picking up

small items is getting harder. My walking is slowly getting worse though

I'm still walking unaided most of the time.

I started taking an antioxidant (enzogenol) a few months ago and I am

convinced it is helping. I also take 20Mg Baclofen per day. I'm not at all

sure that this helps but I'm too scared to stop taking it.

So far I'm not at all sure that there are any other PLSers anywhere near

me here (Bay of Plenty, NZ). There is a MND association but I haven't

been ready to join their meetings yet.

Below this I have copied the original email from Mark about Dr Talbot's

research. However the email in here no longer works instead use

Talbot [kevin.talbot@...]

All the best

Anyone with PLS living in England, or planning to

travel there, is strongly urged to participate in a

study being conducted by Dr. Talbot of Oxford

University in London. Participants will undergo an

MRI exam.

The MRI equipment being used has special software not

found on any other MRI unit. This allows Dr. Talbot

to develop images never seen before of the

corticospinal tract. It is this area that is affected

in PLS.

Dr. Talbot is using a diffusion imaging (MRI)

technique called Probalistic Diffusion Tractography to

measure the integrity of the

corticospinal tract. He is aiming to develop this tool

as a biomarker of PLS and ALS (which would create a

measure that would allow clinical trials of PLS

patients). It may also help to define the

relationship between PLS and ALS.

To participate in Dr. Talbot's study, you'll need to

go to England. If you're interested, please contact

Dr. Talbot at kevin.talbot@... .

This study is funded by the PLS Research Fund at NORD

and comes from monies exclusively raised almost a year

before the creation of the SPF.

Mark Weber

Re: How long did it take for you to be

diagnosed/linda and dennis