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Geo

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Joined
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500
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DX UMND/PLS
Diagnosis
12/2001
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US
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Florida
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Ruskin
For new people . Theres only one test that can tell you if you have ALS ,Thats called an EMG Electromyography . All the Clonus, Muscle wasting Cramps , Weakness or whatever you think ,you will not know unless you have an EMG and even then they want to wait 5 years to make sure . As i can tell you we all have peculiar symptoms . Geo
 

Roger Sanders

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Joined
Feb 28, 2008
Messages
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Reason
DX UMND/PLS
Diagnosis
08/2006
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Go Colts!
City
Johnson City
My story

Hi Geo, I am a new member. I am 36 years old and started having symtoms 6 years
ago but like most men was to stubborn to go to the doctor. Finally after having so much
pain in my calf area of my legs and doing a lot of tripping, falling and breaking bones I
decided there was something wrong with me. I was diagnosed 2 years ago by a ALS
specialist at the University of Kentucky. I had all the tests, EMG, spinal tap, MRI, blood tests and other different tests from my local neurologist. My great grandfather was actually the 3rd person recorded in the state of Tennessee of dying from ALS. He died back in 1946, which later was decided that with all his symptoms he had. My neurologist had difficulty in determing my condition. We checked for MS, Progressive MS and ALS. He finally sent me to an ALS specialist who diagnosed me with PLS. I have a lot of pain in my legs 24 hours a day. I have walked with a cane for a year now. I do not have any strength in my legs especially thighs. I cannot be on my feet long at all or pain gets worse and weakness gets worse. I have clonus in both hands and muscle twitches at various places in the body especially from waist up. I retired from work 1 year ago with disability and also with social security disability. I have been very blessed by God in this situation, has taken care of my family financially. My greatest struggle is I have always been an athlete of playing sports and working out with weights. It is hard for me to watch my kids play ball and I just sit there with my cane in hand and watch them. I tell people not to have pitty on me because God has blessed me and I could be so much worse. I know what little suffering I do today is only a short time compared to eternity in Heaven with Jesus with no pain and suffering.

One thing I have noticed is that a lot of websites say that ALS/PLS is not inherited. My first cousin was diagnosed with MS 2 years ago. I have read a lot recently and on this website were a lot of people with PLS have had other family members with some sort of neurological disorder. Looks to me that it is linked in some way. Thanks for listening.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Roger Have you had more than one Doctor look at you ? If not ,Do. My personal feelings are that i have found so many who have so many different educational backgrounds and most dont have a clue what PLS really is . They have a Label of PLS on us because no other Label fits .Their not sure . If you ever quiz them they turn on you right now . This is a typical Physcological Behavior for someone who has'nt really got a clue and has an Ego the size of Mount Rushmore . I had One doc. who was totally honest and said to me I havent got a clue here .What do you think ? I said together we can find out , he was willing to try anything
all the others ive had if i quiz them they go on the defensive . They have to get that EGO out of the way . My mother yes had Something like ALZ ,this is what they told my Dad . I think her and i had a weak point in the Brain where if something atttack it ,it would be vulnerable . Everybody has an Aqileze heal . Geo
 

Roger Sanders

Member
Joined
Feb 28, 2008
Messages
19
Reason
DX UMND/PLS
Diagnosis
08/2006
Country
US
State
Go Colts!
City
Johnson City
Geo, I have only had 2 different Neurologists look at me. My neurologist in Kingsport, Tennessee was really unsure of what I really had. He sent me to Dr. Kararskis at the University of Kentucky, (Kentucky Clinic). He is supposed to be one of the finer ALS specialists in the country. He looked at my records of all the tests I have had done and examined me and diagnosed me. He was very confident and seemed to know what he was talking about. I have been having flair ups about every month to month and a half.
The last one I had lasted 11 days and ended 2 days ago. During these my symtoms tend to be severe in pain and weakness is increased. Medications due very little for pain during these times. My cousin (who has MS) goes to Duke twice a year is trying to get me to go there. Maybe I should, another opinion couldn't hurt. Thanks, Roger
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
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Alabama
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Mobile
Geo and Roger

You are right Geo. Most of the time they can't DX ALS until a certain point. Not everybody is Dx right away. Tim had Muscle Cramps and Twitches for seven years before suspecting ALS. Go Figure!


Lorie
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
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Roger,
I was reading your previous posts, and wondering what did your EMG show? I assuming it was clean, therefore you were given a pls diagnosed. I am very similar have crazy neuro-muscular disease in family, but just not sure if it was als or not.
I am encouraged that you did not get an als diagnosed. and sometimes wonder if something exsists between pls and ms and als.. Some 4th disease, one that is unkown, and untold. Did you ever look at your grandfather's medical records? because I believe emg's were even around in those days. Write or pm and tell more if you do not mind sharing...Hoping
 

Roger Sanders

Member
Joined
Feb 28, 2008
Messages
19
Reason
DX UMND/PLS
Diagnosis
08/2006
Country
US
State
Go Colts!
City
Johnson City
EMG's

Hoping,

I have had 3 clean EMG's. Dr. Karsarskis at The Kentucky Clinic told me I do not have
ALS but PLS. He said he did not think it would turn to ALS but that doesn't mean that it
can't. He has treated over 800 cases of ALS. Within the last 6 months my symtoms have increased with more intensity and within the last 2 months I have started having
trouble swallowing small and light things like medication and saliva and the feeling like
food is getting stuck in my throat. At my last neuro visit at the end of January, he told me that he would recommend that I have an EMG every 4 months because of increased
symtoms and muscle twitching. I have not seen the medical records of my great grandfather only what my parents and grandparents have told me. He was in very bad
shape in his last days. Roger.
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,420
Diagnosis
09/2007
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State
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Roger,
I would love to know how many people have emg's that change? Jusy wanted to let you know that I have heard o several pals having seudo bulbar pulsy and twitching also, so that is encouraging at least. So e clean emg's is heartening at least.
 
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