Re: just diagnosed

October 26, 2000

Hi Dee,I am also in Canada,London to be exact,where are you.I have a

wonderful neurologist at the London Health Science Centre,University

Campus,he is Dr.Mike Strong,he is also one of Canadas leading ALS

Researchers.In answer to your questions,we are all different,I was diagnosed

in 1988,my first symtoms were catching my toe and tripping,I am still able

to walk,but have a scooter for longer distances,I have had a feeding tube

for almost 8 years,and my voice is pretty much incomprehensible,so I have a

speech engine on a laptop,I type what I want to say and it speaks for me.The

biggest draw back for me,with this desease is fatigue,I have learned over

the years to manage it somewhat,but there is so much I want to do,and

insufficient energy to do it.Anyway you have found a great group of people

at PLS-FRIENDS,I personally don't write much,but I do read every posting

made to the group.I guess I am a lurker.

Take care & keep smiling,Dave Nunn

just diagnosed

> Hello,

> I was just diagnosed with this disease on October 23, by a top

> neurologist in Buffalo, Ny. I have been through the ringer here in

> canada, with docs not knowing what it is I have and then a few were

> ready to tell me that it was all psycological. I am now in a

> wheelchair, 3 years ago, my legs started to give out on me, so they

> originally told me I had ostoprosis in the advanced stage. I used a

> cane, but found it difficult to walk and it felt like it took for

> hours to walk from one area of my house to another. Then one day, I

> came home from shopping, My dog ran out to greet me (like dino the

> dinasour does with fred on the flinstones). My dog jumped up on top

> of me and down i went on a piece of ice lossing my balance. I tried

> to move my legs to get up, they wouldnt move, this scared the heck

> out of me. My ex husband (at the time he wasnt my ex) came home and

> dragged me to the emergency room of a hospital. They couldnt figure

> out what was wrong, so they kept me in the hospital for observation.

> I was there for 3 months. They tried to get me up walking but my legs

> wouldnt go. Then I got a real scare, my legs started shaking

> uncontrolablly, I didnt know what to do. Different things seem to pop

> up and it seemed like my own doctors didnt want to deal with it. My

> family doctor, said it was psycological and sent me to a

> psychiatrist. I have been to tons of specialist and the only things

> that came up possitive were the evoke potentials (emgs) and the

> reports from urologist saying my sphinctor muscles no longer work,

> needless to say now I have a cathader. So here I am, with a

> diagnosis, and now I know I am not crazy lol. I tried to look up all

> the information on this disease, but couldnt find much except that my

> symtoms are exactly what is said. It didnt say I would wind up in a

> wheelchair or whether i will ever walk again, however the neurologist

> in Buffalo said I would never walk again. I feel so lonely and dont

> know what more to expect from this disease or how much worse I will

> get. I am a bit scared and when I found this website, I was so

> relieved, I hope someone can help me answer these questions, and or

> possibly give me some more information on what to expect from this

> scary disease. In advance I thank you kindly for taking the time to

> read this and helping me. I am trying to keep a possitive attitude,

> but find it difficult being kept in the dark about what may happen.

> Hope to hear from you guys soon.

> (((((((((((HUGS))))))))))))

> Dee

>

October 26, 2000

Dee:

First of all please try not to be scared. ou are not alone! I have had

PLS for over 20 years, and we all have been thru what you went thru. It

is not an easy disease to diagnose. I am 64 and live in NH, and am one

of the lucky ones, I still walk and talk, drive and walk with a 4

wheeled walker. and am free from pain. I have learned that stress and

attitude (in my case) hinder my physical condition. I also have learned

that for me " less is best " . The less I do, the better I feel. We all

have been where you are mentally, as our physical differences vary. You

will find this group a wonderful supportive bunch of people. We all

take different approaches to this disease. We are all different, that

we learn from meeting with each other, I have been lucky enough to meet

with 8 people with PLS, and we are planning a get together this weekend

in CT. This is a wonderful way to learn from each other and also make

good friends.

Please don't feel lonely, we are hear for you. You can write to the

group as a whole or feel free to write to me direct (a lot do), about

things you wish to share in private (girl talk).

God Bless, and do stay in touch!

Your new PLS Friend

Rita

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

October 26, 2000

Hi Dave,

I am in Brampton. I have a good friend who lives in London, but never go to

see her due to the fact I have no place to stay because her home is not

wheelchair accessable. I am also having problems with my voice, now when i

talk on the phone, every things I am a man. my voice starts to go a bit too.

I am glad that you have the machine so you can communicate. I want to thank

you so much as well as the other people in pls friends for the quick and

helpful responses.I am grateful for the computer and this group. I felt so

much better knowing I am not going through this alone.

Dee

just diagnosed

>

> > Hello,

> > I was just diagnosed with this disease on October 23, by a top

> > neurologist in Buffalo, Ny. I have been through the ringer here in

> > canada, with docs not knowing what it is I have and then a few were

> > ready to tell me that it was all psycological. I am now in a

> > wheelchair, 3 years ago, my legs started to give out on me, so they

> > originally told me I had ostoprosis in the advanced stage. I used a

> > cane, but found it difficult to walk and it felt like it took for

> > hours to walk from one area of my house to another. Then one day, I

> > came home from shopping, My dog ran out to greet me (like dino the

> > dinasour does with fred on the flinstones). My dog jumped up on top

> > of me and down i went on a piece of ice lossing my balance. I tried

> > to move my legs to get up, they wouldnt move, this scared the heck

> > out of me. My ex husband (at the time he wasnt my ex) came home and

> > dragged me to the emergency room of a hospital. They couldnt figure

> > out what was wrong, so they kept me in the hospital for observation.

> > I was there for 3 months. They tried to get me up walking but my legs

> > wouldnt go. Then I got a real scare, my legs started shaking

> > uncontrolablly, I didnt know what to do. Different things seem to pop

> > up and it seemed like my own doctors didnt want to deal with it. My

> > family doctor, said it was psycological and sent me to a

> > psychiatrist. I have been to tons of specialist and the only things

> > that came up possitive were the evoke potentials (emgs) and the

> > reports from urologist saying my sphinctor muscles no longer work,

> > needless to say now I have a cathader. So here I am, with a

> > diagnosis, and now I know I am not crazy lol. I tried to look up all

> > the information on this disease, but couldnt find much except that my

> > symtoms are exactly what is said. It didnt say I would wind up in a

> > wheelchair or whether i will ever walk again, however the neurologist

> > in Buffalo said I would never walk again. I feel so lonely and dont

> > know what more to expect from this disease or how much worse I will

> > get. I am a bit scared and when I found this website, I was so

> > relieved, I hope someone can help me answer these questions, and or

> > possibly give me some more information on what to expect from this

> > scary disease. In advance I thank you kindly for taking the time to

> > read this and helping me. I am trying to keep a possitive attitude,

> > but find it difficult being kept in the dark about what may happen.

> > Hope to hear from you guys soon.

> > (((((((((((HUGS))))))))))))

> > Dee

> >

>

October 26, 2000

Dee,

I haven't read if anyone else has responded to you yet. My name is Mike

Gray. I'm 52, married, with 4 children and one granddaughter. The

granddaughter and the youngest are only 2 yrs apart (7 and 9). I was

diagnosed in May of 96. My symptoms began in 94, possibly earlier. I really

began to have problems in Jan 95 and was hospitalized in Feb 95. Saw 4

neurologists and one neuropsychiatrist through Aug of 95. Had to have a hip

replacement in July 95 because the van that picked me up to take me to

Physical Therapy rolled forward and broke my hip. No one believed me for six

weeks. I had been sent to a psychiatrist during this time and he told me

that my problem was not in my head, as I had been told. I already knew this

because my profession is as a therapist. I'm licensed in IN. But the the

other neuros all told me it was conversion disorder. I knew it was wrong. I

also knew something was wrong with my hip. Their disbelief about this cost

them a lot. (More boring details, if you want them.) I was encouraged by my

psychiatrist, who did have a background in neurology also, to see another

neurologist. I put it off. We considered going to Mayo's, but the cost

seemed prohibitive at the time. Then we saw my son's pulmonary doctor, who

had seen me using a walker before. She asked what my diagnosis was. I told

her. She said that wasn't an answer and I deserved an answer. She

recommended Mayo's or Hoosier Neurology at Methodist Hospital in

Indianapolis. She said she believed it was the best in the state, and said

her husband worked there. Since she had been with us for a few years, I

decided to get an appointment with her husband. Within two weeks I had the

diagnosis of PLS. He changed my medication and things began to improve. I

returned to work in Aug of 96 and continue to work. I can also walk without

my walker frequently, but not in open spaces.

I had problems with muscles going into painful spasms, an extreme startle

response that caused me to fall if I was standing or jerk if sitting down. I

have fallen several times and required plastic surgery on my face twice.

There were several other stitches, also. I used to have paroxsymal spasms

with the falls (it looks like a seizure, but I can't breathe and am fully

conscious while it is happening.), but they seem to have stopped now. At

least, I haven't had one for a long time. The startle response is also under

control. I am apparently one of the lucky ones: My PLS has not progressed

very rapidly, but may even have improved a little. My neurologist has said I

am in better condition now than when he first saw me. I believe prayer has

helped tremendously. Mine and those of many, many others. I believe that God

has given me this for a purpose, but I can't discover the purpose.

My message is to take good care of yourself, stay away from stressful

situations, and keep a positive, upbeat outlook on life. You are facing a

major change in your style of living, but you can control the disease and

not let it control you.

Feel free to ask any questions of this group. Someone will have an answer

for you.

Mike Gray

theangellady1@... wrote: