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My husband had symptoms for a long time, we thought it was his "back" and after his last surgery which was a triple fusion, he immediately had horriable leg pain. We saw two neuros here who suspected some type of MND but after hearing so many positive things about Cleveland Clinic we decided to go there. They did many of the same tests the first neuro did and observed him for about 18 months and would not label him as anything, all they would say was that it was not ALS. We decided that the "LABEL" was not as important as symptom control. After all, when you check these sites people with ALS and PLS all have so many symptoms and different rates of progression and I even saw one post where a woman went from finger twitching to total body breakdown in 14 months but was still labeled PLS due to "normal" EMG's. Made no sense to me. We have been doing follow up with a local neuro and it's been over three years now and they have finally started muttering PLS as of last year. When I think back, all the restless arms, back issues, pain in his legs, restless arms, these were probably all MND and we didn't know it, so who really knows how long this has been going on. Documented, we are on year 3. A friend of ours had ALS for 24 years. He never needed a vent and always had a voice, although garbled. When this all started he said the funniest thing, he said that if he got out a shovel and dug a grave everytime someone told him he was going to die he would have been able to plant a forest. He even outlived some of the most sympathetic "friends" who tried to help him deal with his illness. I guess my point is, it is what it is. Life sure is a kick isn't it? IT's not what you plan but how you deal with what comes up. We're trying. Some days we are better at it than others. As a spouse, I would rather have it myself than watch my loving adorable husband go through this. Hang tough people...hang tough.
 
Hello Nancy,

Thank you for responding.

My sister was diagnosed with ALS and died less than three years later. ALS and PLS affect people so many different ways. I did talk with the doctor's assistant an my appointment is confirmed. So starting the 29th I will be waiting for another diagnoses of either PLS or "I do not know".

No one knows how to control my symptoms at all. I was given Baclofen but since I did not have any spasticity it did nothing but make me tired all day so I stopped taking it.

If I do have it I am thankful that about three years my wife and I purchased long term care insurance so if I do get bad with PLS she will not have to worry. She has a bad back as it is and is in pain a lot but not all the time.

Well once again I am waiting for a diagnosis. Whichever way it goes I will take it on and be victorious for my Father in heaven is my strength and my peace.

Brother Rock
 
Brother Rock, So your sister AND you both have been through this. Yikes, that really stinks. I am sorry about your sister. It must have hit her fast. How long did it take to diagnose her? Did she go on a vent at all? Some people do and others don't. Just wondering. What a decision to make. Hope all goes well for you. Think S L O W...:)
 
Brother Rock, So your sister AND you both have been through this. Yikes, that really stinks. I am sorry about your sister. It must have hit her fast. How long did it take to diagnose her? Did she go on a vent at all? Some people do and others don't. Just wondering. What a decision to make. Hope all goes well for you. Think S L O W...:)

Thank you for your kinds words Nancy. I believe it took most of a year before she was finally diagnosed with ALS. I saw her on during the day she passed away and know in my heart she was going to me the Lord very soon. I got the call late that night about here passing away. They asked for one word to describe her at her funeral and I chose the word courageous. She took ALS by the horns and would not let her defeat her spirit. If I indeed have PLS I am going to do the same. I am not sure what is meant by a vent. If it was for breathing assistance then no. Her diaphragm went last. She was struggling to breathe on her own the day I last saw her alive. I will put you and your husband on my prayer list. Take care.

Sincerely
Brother Rock

p.s. thinking SSSSSLLLLLLLOOOOOOOWWWWWW! :lol:
 
Brother Rock,

Yes, by vent I did mean assistance with breathing. I had a friend who had ALS and he lived for 24 years. He refused a vent at the end too. He ended up passing due to a stomach issue and they couldn't operate due to his condition. He was like your sister, brave and it didn't define his life. Every time he emailed he ended with, "Read God's Word The Bible Daily." I know his faith was strong and he knew that we have no control in this world but God does promise wonderful things for us. My hope is that those who have had it really rough this time around get something absolutely wonderful the next time. Thanks for adding us to the prayer list. I pray too, and without that I am not sure I would be sane. I read the scripture at Isaiah 41:10 when I need a reminder. "Do not be afraid, for I am with you. Do not gaze about, for I am your God. I will fortify you. I will really help you. I will really keep fast hold of you with my right hand of righteousness." It always helps me, I hope it helps you too.
 
I do not know how anyone can go through PLS without the Lord. I firmly believe that if I have PLS I can handle it because God tells me in Philippians 4:13 that "I can do all things through Christ which strengtheneth me."

Sincerely
Brother Rock
 
......with self relience, strength of character and a bucket load of guts....as shown by many on these boards....johnny..
 
Hello all. I met my new doctor Friday. He is a character and I like him. He is also very knowledgeable in upper and lower motor neuron issues. I prepared a brochure for him that contained the history of my problems since 2007, copies of the reports on MRIs, EMGs and such, and also results from all my blood test and the spinal fluid test. I also gave him copies of my CDs of the MRIs. He said he would look at what I gave him and determine it all things that could cause my problems were tested for and schedule me for any are missing. He also believes I have a nerve related problems along with the loss of strength issues. He promised to get back to me next week. So now I wait again. Take care all and I hope you had a good weekend.
Brother Rock
 
I met my new doctor Friday. He is a character and I liked him. He is also very knowledgeable in upper and lower motor neuron issues (ALS and PLS). I prepared a package of information for him that contained the history of my problems since 2007, copies of the reports on my MRIs, EMGs and such, and also the results from all my blood and spinal fluid test. I also gave him copies of my CDs of the MRIs. He said he would look at what I gave him and determine it all things that could cause my problems were tested for and schedule me for any that are missing. He also believes I have a nerve related problems along with the loss of strength issue. He promised to get back to me next week.

So now I wait again. A bit anxious as his diagnosis will affect the rest of my life. If he comes back with PLS or even possibly ALS (according to him it is still a possibility), I have some life changing decisions to make very soon. If it is determined to not be PLS, ALS or some other disease and cannot be determine, I will no longer pursue a diagnoses. So, if the doctor comes back with some kind of incurable motor neuron disease or not, I will get on with the life the Father has given me and try to live to bring Him the glory that He overwhelmingly deserves.

But I must say that I have almost completely convinced myself that I do NOT have PLS or ALS. So we shall see.
 
Where do you buy the bucket loads of guts Buddy, cause I sure could use some? ha ha
 
dont know, nancy, easy to say....but those on here find it.......ps....not me...am a wuss in comparison....johnny
 
Where do you buy the bucket loads of guts Buddy, cause I sure could use some? ha ha
I can do ALL THINGS through Christ who strengthens me Nancy. Here is my latest update from an e-mail I sent to my relatives.
When I last talk with my new doctor he said that after reading through my documentation and looking at the MRIs he could not find anything that would be causing me my problems. The MRIs do not show any pressure points on the spinal cord. However, he noticed that there were some diseases that could cause my symptoms that have not been checked for and most of them are treatable. He was supposed to have gotten the request in last week to have some blood test done but did not. I was a bit bothered so I called in Friday morning wondering what was going on and had to leave a message. His nurse called me Friday evening and told me his daughter was getting married that week - so I understood. She also said she would remind him this week and I should hear from the hospital about getting blood drawn.

Some things the doc did say to me at the original appointment were that PLS is symmetrical and usually starts in both legs or arms, ALS is asymmetrical starting in one leg or arm. Well, I just have the one leg so far, however he also said usually PLS and ALS start at the ends such as the feet or forearms. Mine started in my right thigh. But he also said there is no usual way either start and it affects different people differently. With all that said I felt in the way he said I may have one or the other that he really does not believe I have either. He does believe I have multiple issues overlaying each other and obscuring each other (my choice of words).

I have been discharged from PT today. They said they have done all they could for me and I had some progress but not much. I am going to do what I can for as long as I can to try and maintain strength in my leg(s) by using the exercise bike and treadmill we have at the house. I use my cane more often than I want to now-a-days and do not do much labor work around the house after work as I once did. But then that may be I am 57 years old too!

PT is going to get me an brace for my leg to help with my toe drop.
 
A little over 4 years ago (2008) I started with a cold foot. Well at least it "felt" cold but not to the touch. No reason found.
My next problem was my foot felt REALLY cold one day and I took my sock and shoe off and my foot was ghost white and I could not see any blood vessels. It was cold to the touch. This occurs on an off but not too often and a good foot rub usually restores to blood flow.
I start to experience numbness and tingling in my right foot and that is still happening to this day.
I saw a neurologist in 2009 and started having various MRIs done starting with the pelvis and right hip. Nothing found.
2010 had a CT scan of my lower body - nothing found, X-Ray nothing found
2011 Brain and Lumbar still for numbness and tingling in my right foot.- nothing found as usual. EMG - nothing
Sep 2011 started physical therapy for a month and now my left foot is starting to feel like my right foot with numbness and tingling. My right leg was between 26% to 53% weaker than my left leg but improved some strength but soon I lost most of that strength.
2012 My doctor sent me to a Neurologist. Spine MRI and X-Ray possible problem with lower back so I was given a epidural which did nothing for me.
Finally decided to go to Cleveland clinic and after more MRIs, X-Rays and EMG+ they said I had PLS.
I found this site and after seeing most of you have very bad symptoms and I do not have anything but weakness in my right thigh but not the calf. I cannot tap my right foot. I have tingling and numbness during the day which seems to get worse in the evenings especially the tiredness. No pain, no cramping, no spasticity.

Has anyone one of you started like this? I need to know as when I see what all of you are going though I find it very hard to believe I have PLS. Please help me! :-(

I have PLS. I started with my speech. Then my leg my left leg weak. I started dragging it and I say the medicine the nuerologist gave me Mirapex,do not drag anymore. I have stiff muscles but that seems to be it.
 
Delia - Your symptoms sound like what I experienced in the early stages. I sincerely hope these are the only problems you have for many years to come. Good luck and take care of your general health.
 
A little over 4 years ago (2008) I started with a cold foot. Well at least it "felt" cold but not to the touch. No reason found.
My next problem was my foot felt REALLY cold one day and I took my sock and shoe off and my foot was ghost white and I could not see any blood vessels. It was cold to the touch. This occurs on an off but not too often and a good foot rub usually restores to blood flow.
I start to experience numbness and tingling in my right foot and that is still happening to this day.
I saw a neurologist in 2009 and started having various MRIs done starting with the pelvis and right hip. Nothing found.
2010 had a CT scan of my lower body - nothing found, X-Ray nothing found
2011 Brain and Lumbar still for numbness and tingling in my right foot.- nothing found as usual. EMG - nothing
Sep 2011 started physical therapy for a month and now my left foot is starting to feel like my right foot with numbness and tingling. My right leg was between 26% to 53% weaker than my left leg but improved some strength but soon I lost most of that strength.
2012 My doctor sent me to a Neurologist. Spine MRI and X-Ray possible problem with lower back so I was given a epidural which did nothing for me.
Finally decided to go to Cleveland clinic and after more MRIs, X-Rays and EMG+ they said I had PLS.
I found this site and after seeing most of you have very bad symptoms and I do not have anything but weakness in my right thigh but not the calf. I cannot tap my right foot. I have tingling and numbness during the day which seems to get worse in the evenings especially the tiredness. No pain, no cramping, no spasticity.

Has anyone one of you started like this? I need to know as when I see what all of you are going though I find it very hard to believe I have PLS. Please help me! :-(

No I did not experience this. I was so glad to hear from someone. Thanks !
 
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