It seems like no one knows for sure if they have PLS. It has definitely been interesting getting perspective from both people diagnosed with it and also family members dealing with it. Apparently my Dad is not ready to get onto this forum himself, but my Mom has been showing him several of our posts. I really think he is starting to turn the corner from a state of mind standpoint after reading our thoughts and yours. What I've really taken from this forum is that it is a good place to discuss all of the tests and guesses that are made at what the ailment is. My Dad recently had a spinal tap that came back normal as EVERY other test has. I guess I just can't understand how any diagnosis can be made from a bunch of NORMAL tests! If PLS is a disease that attacks your upper neurons or whatever they are called, why can't there be a test for that?
Now that I've been reading your posts...
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Gracie
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You have to be pretty healthy to get PLS?
You certainly have hit the nail on the head and we have asked ourselves the very same questions. MRI of the brain, cervical, thorasic, lumbar, knee, and shoulder MRI's all proved negative for anything, 14 tubes of blood negative for anything, spinal tap negative for anything, 3 nerve study tests. However, clonus of foot, hyperflexia of legs and arms, Babinski of knee, pain in legs and spasms of legs and sometimes arms, creeping feeling on skin of arms and legs and sometimes back of neck, how can all of the above testing possibly prove negative when the patient feels so bad? I feel so bad for anyone that has been through all of these test and have been poked at and proded by Primary Doctor, Orthopedic Specialists, Brain and Spinal Surgeon, Nerve Study Physicians, Neurologist and second opinion Neurologist and still we have so many unaswered questions about PLS. You are not alone!
Gracie:
You certainly have hit the nail on the head and we have asked ourselves the very same questions. MRI of the brain, cervical, thorasic, lumbar, knee, and shoulder MRI's all proved negative for anything, 14 tubes of blood negative for anything, spinal tap negative for anything, 3 nerve study tests. However, clonus of foot, hyperflexia of legs and arms, Babinski of knee, pain in legs and spasms of legs and sometimes arms, creeping feeling on skin of arms and legs and sometimes back of neck, how can all of the above testing possibly prove negative when the patient feels so bad? I feel so bad for anyone that has been through all of these test and have been poked at and proded by Primary Doctor, Orthopedic Specialists, Brain and Spinal Surgeon, Nerve Study Physicians, Neurologist and second opinion Neurologist and still we have so many unaswered questions about PLS. You are not alone!
Gracie:
Geo
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Well heres the strait and Narrow of it , in my post on Viruses i made mention of how and what a virus does when entering the body . It Mutates or changes to match the sorrounding body tissue ,that way theres no response from the immune system ,or little response at all . Personally mine entered through (i beleive my sinuses ) attached to a Nerve as a Pox Virus does and follows it to where it goes . In mine Upper Motor Neurons . This is how mine was Bulbar or speech related . These Normal Tests cannot detect a virus as a virus is 20,000 times smaller than the head of a needle . & can go through the Blood Brain Barrier . And especially when a Virus Mutates or looks like normal tissue . So my Belief is a PCR test Poly/chain /Reaction
Youve by now heard of a PCR test OJ trial , this is a Genetics test .But lets say you find a virus in there ,how do you get it out without hurting normal tissue ? And No im not a doctor ,i was a Plumber for 40 years Im different than a person that Just gives up . If you lay down someones going to throw dirt over you assuming youve given up . So get your Butt up and learn .LOVE Geo Happy Thanksgiving
Youve by now heard of a PCR test OJ trial , this is a Genetics test .But lets say you find a virus in there ,how do you get it out without hurting normal tissue ? And No im not a doctor ,i was a Plumber for 40 years Im different than a person that Just gives up . If you lay down someones going to throw dirt over you assuming youve given up . So get your Butt up and learn .LOVE Geo Happy Thanksgiving
You make a great point...
about not lying down with this disease! That is the message we are currently trying to get through to my Dad. I sincerely hope that he finds that fire I know he has inside to fight this off or at least slow its progression. It just stinks that anyone diagnosed with PLS has to deal with so many unanswered questions. It takes an unbelievably strong person to have the hope and focus to fight something when they aren't even sure that they have it and they know that there is no known cure. I'm thankful that he doesn't have something like cancer, but at least then you know what you are up against and can form a plan of attack. It also stinks that this disease is so new and rare that there is minimal funding for new research. I guess that is up to us.
about not lying down with this disease! That is the message we are currently trying to get through to my Dad. I sincerely hope that he finds that fire I know he has inside to fight this off or at least slow its progression. It just stinks that anyone diagnosed with PLS has to deal with so many unanswered questions. It takes an unbelievably strong person to have the hope and focus to fight something when they aren't even sure that they have it and they know that there is no known cure. I'm thankful that he doesn't have something like cancer, but at least then you know what you are up against and can form a plan of attack. It also stinks that this disease is so new and rare that there is minimal funding for new research. I guess that is up to us.
Geo
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With Cancer you know you'll problably Die
With PlS you are told you wont die from it ,on the other hand once cancer enters the picture you always know it will problably know it will be back at some point . Ask Yourself is the glass half empty or half full . Ive been close to death when i was on Baclofen and had to gasp for every breath .I passed out not before thinking i was dieing
I laid in bed gasping for air and getting weaker ,i thaught i died But problably passed out for lack of oxygen .then saw a bright light and awoke . Ive been to what i thaught was the end . and now have been forever changed . Im going to hang in there and try
Geo
With PlS you are told you wont die from it ,on the other hand once cancer enters the picture you always know it will problably know it will be back at some point . Ask Yourself is the glass half empty or half full . Ive been close to death when i was on Baclofen and had to gasp for every breath .I passed out not before thinking i was dieing
I laid in bed gasping for air and getting weaker ,i thaught i died But problably passed out for lack of oxygen .then saw a bright light and awoke . Ive been to what i thaught was the end . and now have been forever changed . Im going to hang in there and try
Geo
I'm with you Geo. I can appreciate the difference but I need to get my Dad to do the same! I hate that you ever had to experience anything close to death and hope that it is in the very distant future for you! I don't want my Dad to have to have a near death experience to appreciate how good he's got it. I wish he could have heard a radiothon that I listened to here in Raleigh the day before Thanksgiving. It was raising money for the Make a Wish Foundation. They had kids on there that were so strong and so innocent and so happy and not even blinking twice about their ailments. They were forced to be so strong at such a young age and I couldn't hold back my tears listening to their stories. The fact that these kids may not even see their teens really puts things into perspective. I pray that my Dad finds that perspective.
Geo
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Sometimes in life we are made to make decisions we would not normally have to make . As soon as we realized i may not have alot of years left ,i went out and had a living will made out with a DNR (do not resesitate ) clause in it ,as i dont want my wife to be puinished for something that happened to me . We sold our house in Ill. and moved to Florida where i felt i would try and make the most out of what years i have left . When he gets done feeling sorry for himself and realizes that your mom is suffering too ,then he'll make smarter decisions . Build that fire under him or he wont have an incentive to make good decisions .
God Bless and good luck . Give me Luck over Good Looks anyday LOL
God Bless and good luck . Give me Luck over Good Looks anyday LOL
patricia1
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I read the post and I spoke to my md and he said I cant have pls because of my speech hOwever I ave read post that people do ave slurred speech I was confused Whats with the attitude I have a slow progression and thougt it may be PLS. That wasnt the answer I was looking for
robc
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RE: Tests for PLS.
PLS affects upper motor neurons only. With PLS, you will find spasticity and brisk reflexes. Over time, reflexes will become more brisk & you will usually also have specific types of neurogenic reflexes (hoffman's, tremnors, jaw jerk, etc).
So there are definite signs of PLS. Spasticity & brisk reflexes can be due to other things, but once everything else has been ruled out, from what I gather, you're left with PLS, upper motor neuron onset ALS, or Spastic Paraplegia/Hereditary Spastic Paraplegia. Most types of Spastic Paraplegia/HSP affect legs but not arms or hands.
Patricia - PLS causes spasticity and weakness of voluntary muscles, but does not typically cause atrophy. Spasticity & weakness is enough to affect speech though.
PLS affects upper motor neurons only. With PLS, you will find spasticity and brisk reflexes. Over time, reflexes will become more brisk & you will usually also have specific types of neurogenic reflexes (hoffman's, tremnors, jaw jerk, etc).
So there are definite signs of PLS. Spasticity & brisk reflexes can be due to other things, but once everything else has been ruled out, from what I gather, you're left with PLS, upper motor neuron onset ALS, or Spastic Paraplegia/Hereditary Spastic Paraplegia. Most types of Spastic Paraplegia/HSP affect legs but not arms or hands.
Patricia - PLS causes spasticity and weakness of voluntary muscles, but does not typically cause atrophy. Spasticity & weakness is enough to affect speech though.
Geo
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Facial and neck muscles ,diaphram muscles(lungs) ,leg muscles . I am a PLS patient 7+years now ,I have no weakness at all just Spasticity ,Stiff muscles . Weakness to some is lack of muscle control or stiffness because the muscle will not respond in the way it should . Try kneeling down on one knee ,now holding onto something ,pull yourself up or push up with the knees or both . Muscular Atrophy is only in ALS Hence the name Amyotrophic A/ MYO many / Trophic wasting / Lateral the Lateral Columns in the spine 2 /Sclerosis
Wasting or deteriorating . Also Try squeezing someones fingers as hard as you can ,a weak person will have no squeeze . Next sitting down take one hand on the leg now flip your hand over and over from back to front .The speed at which you can flip your hand is the speed of the signal from your brain to your hand . This is done by the Motor Neurons .On the other hand MG Myasthenis Gravis is a Neuromuscular Junction disease and you'll have weakness after a period of Motion or movement . So Weakness and PLS is conjecture . I had Bulbar First ,meaning in the face Bulbar means Bulb or tongue . This simply means whatever got me, went for my facial muscles first then the legs . Geo
Wasting or deteriorating . Also Try squeezing someones fingers as hard as you can ,a weak person will have no squeeze . Next sitting down take one hand on the leg now flip your hand over and over from back to front .The speed at which you can flip your hand is the speed of the signal from your brain to your hand . This is done by the Motor Neurons .On the other hand MG Myasthenis Gravis is a Neuromuscular Junction disease and you'll have weakness after a period of Motion or movement . So Weakness and PLS is conjecture . I had Bulbar First ,meaning in the face Bulbar means Bulb or tongue . This simply means whatever got me, went for my facial muscles first then the legs . Geo
MICHELLE40f
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slurred speech
If you look up primary lateral sclerosis on the web,it tells you that a symptom of primary lateral sclerosis is SLURRED SPEECH.::|
If you look up primary lateral sclerosis on the web,it tells you that a symptom of primary lateral sclerosis is SLURRED SPEECH.::|
olly
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hi,ive been ill for 8yrs. i have spacticity,hyp er reflexes but i also have slurred speach,progressive muscle weakness and sometimes twitchings. the neuro is not sure what it is,but mris,tests includinggenetic for hsp are all clear so just leaves pls or als(suspect umn als)last year found out i have hypotonicity(loss of muscle tone) this is a lmn sign. going to have emg done to see if it is als
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