yes my husband is very supportive. But he doesn't know what to do to make it better. I'm so tired mentally a physically drained. In tired of going to the er. I just want to be ok. I need to be ok my little son has learning delays and might possibly be autistic. I'm so scared for him if I'm not here. Thank you so much for your support I know you have your cross to bare.
very nervous
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seeblueeyes1108
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Hey Katy,
My name is Jennifer and I am 36 with 2 children and just found out in August 2007 that I had ALS. I have to say I read about you, and all those things had happened to me. I was a spinning instructor and sprained my left ankle last July 2006 and it since then has progressed into the left leg all the way to the hip, and in April 2007 it was starting to go to my right leg. After being tested for evrything locally, my doctor told me I should go to the Mayo Clinic. I was a lab rat for 9 days, went under all kinds of tests, to be told on my last day there that I had ALS. I am now confined to a wheelchair and it is in both legs fully. I am unable to move my legs. My upper body has been fine, until under severe stress and major depression ,it is now making my left arm weak. I have physical therapy 3x a week and occupational therapy 3x a week as well. The more and more I research the more I do not understand why bad things happen to good people? I would suggest going to the Mayo clinic for tests. I hope you get better news than when I went. No matter who you are, this disease is very overwhelming, and life altering. No matter what, stay strong. Please feel free to message meif you need to talk. My name is Jennifer.
My name is Jennifer and I am 36 with 2 children and just found out in August 2007 that I had ALS. I have to say I read about you, and all those things had happened to me. I was a spinning instructor and sprained my left ankle last July 2006 and it since then has progressed into the left leg all the way to the hip, and in April 2007 it was starting to go to my right leg. After being tested for evrything locally, my doctor told me I should go to the Mayo Clinic. I was a lab rat for 9 days, went under all kinds of tests, to be told on my last day there that I had ALS. I am now confined to a wheelchair and it is in both legs fully. I am unable to move my legs. My upper body has been fine, until under severe stress and major depression ,it is now making my left arm weak. I have physical therapy 3x a week and occupational therapy 3x a week as well. The more and more I research the more I do not understand why bad things happen to good people? I would suggest going to the Mayo clinic for tests. I hope you get better news than when I went. No matter who you are, this disease is very overwhelming, and life altering. No matter what, stay strong. Please feel free to message meif you need to talk. My name is Jennifer.
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CindyM
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Hi Jennifer. I am sorry you have ALS and sorryier still that it took 9 days of beign a lab rat before they could say what was happening. You found a good spot on the internet, though. Lots of caring and kind-hearted folks to share this journey with.
Not everyone on the "net" is kind, though. And everyone can see what is posted here. If you want me to edit out your email address just give the word. You might be getting a lot of spam by now...Cindy
Not everyone on the "net" is kind, though. And everyone can see what is posted here. If you want me to edit out your email address just give the word. You might be getting a lot of spam by now...Cindy
MtPockets
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Hi Jennifer,
Welcome to the forum. Sorry for the reason you had to look us up. Please feel free to jump in with any questions you may have. The people here are like one big extended family who help one another along this bumpy road we all face.
Welcome to the forum. Sorry for the reason you had to look us up. Please feel free to jump in with any questions you may have. The people here are like one big extended family who help one another along this bumpy road we all face.
olly
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jattd
hi, i just wanted to wish you all the best with your appointment this week. i hope you are feeling a bit more calm and better than you did last week. let me know how you get on. did you go away for the weekend? i hope you are ok.
god bless
caroline
hi, i just wanted to wish you all the best with your appointment this week. i hope you are feeling a bit more calm and better than you did last week. let me know how you get on. did you go away for the weekend? i hope you are ok.
god bless
caroline
sironside
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I cry every day too. I'm only 22 and have these horrible symptoms but no pain. I'm losing tons of weight (I'm skinny to begin with) because of nausea lately and my husband is very unsupportive by trying to give me a "reality check" every day. I'm so sick of crying, I think that's the worst with ALS is that it can take a while until they rule everything out and finally diagnose you, and by that time you lose precious time. I'm really scared and can use all the support I can get.... I'll try and support you and others who are going through this "in between" phase of having symptoms and not knowing what it is.
olly
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hi jattd
i left you a message last week.
did you go to your rheumatologist appointment? what did they say? when is your neurologist appointment?
i hope you are calmer and feeling a bit better. hang in there.
take care
caroline:-D
i left you a message last week.
did you go to your rheumatologist appointment? what did they say? when is your neurologist appointment?
i hope you are calmer and feeling a bit better. hang in there.
take care
caroline:-D
hi and thanks for checking in. im doing really bad. the dr. did an upper nvc and emg which where normal and i go back friday for the bottom. my legs hurt so bad and they wont stop twitching. i dont think i can go on anymore the pain and fear is killing me and dont want to live like this anymore. i cant let my kids and husband watch me suffer. i cant go on like this anymore.
MtPockets
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I know how you feel when these symptoms first start, but please talk to us here and let us help you work your way through this time in your life. It is difficult but not impossible. We have already walked a mile in your shoes so to speak. Only problem I no longer walk, and can't wear shoes due to leg and feet swelling.
I was Dx with ALS on May 11, 2006 and now I am in a wheelchair, but I still enjoy life. My life did not end, but actually got better because my focus has changed.
It takes time to adjust to the feeling you are experiencing. Don't give up HOPE. You are in my prayers.
Just one of the many, who cares.
I was Dx with ALS on May 11, 2006 and now I am in a wheelchair, but I still enjoy life. My life did not end, but actually got better because my focus has changed.
It takes time to adjust to the feeling you are experiencing. Don't give up HOPE. You are in my prayers.
Just one of the many, who cares.
Thank you Al I have read many of your posts and you sound very informative caring and brave. I feel very guilty posting because I don't even know if this what i have. the fear of this and the possibility of leaving my children without a mother is taking over my life i dont want to live this way and dont think I can take it much longer. please forgive me. im an emotional wreck. I want to know does a normal emg nvc confirm yot don't have als they did my upper half now im waiting for the bottom1
happy
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jattd,
My heart goes out to you. I just want to encourage you. You will be okay. Having a negative emg is a good sign. That is what I was told. I think the main thing here is, and I know it is hard, is try to get a handle on your fear. It is not easy but you must. The crippling fear only makes your symptoms worse. Try as hard as you can to make today a good day. Even if you are feeling badly be with your kids today. Take them to the park or something. Do stuff today to get your mind off of what you are going through. Watch funny movies, go outside, anything that you like to do. I know when my symptoms began it drove me to all kinds of dark places. No matter what you have today. Look around and instead of focusing on all that is wrong try to look at what is good. I wish I had done this in the begining. My fear was like you so crippling that I lost 2 entire months to the couch and this computer. Crying, reeling in my mind about my ultimate death, and how unfair this all was. I can tell you it made me worse. I actually had to come to terms with the worse case. There are many people on this forum that you can learn from. But I encourage you today try not to stay on the computer. Be happy, you can do it. I will pray for you.
Robin
Robin
My heart goes out to you. I just want to encourage you. You will be okay. Having a negative emg is a good sign. That is what I was told. I think the main thing here is, and I know it is hard, is try to get a handle on your fear. It is not easy but you must. The crippling fear only makes your symptoms worse. Try as hard as you can to make today a good day. Even if you are feeling badly be with your kids today. Take them to the park or something. Do stuff today to get your mind off of what you are going through. Watch funny movies, go outside, anything that you like to do. I know when my symptoms began it drove me to all kinds of dark places. No matter what you have today. Look around and instead of focusing on all that is wrong try to look at what is good. I wish I had done this in the begining. My fear was like you so crippling that I lost 2 entire months to the couch and this computer. Crying, reeling in my mind about my ultimate death, and how unfair this all was. I can tell you it made me worse. I actually had to come to terms with the worse case. There are many people on this forum that you can learn from. But I encourage you today try not to stay on the computer. Be happy, you can do it. I will pray for you.
Robin
Robin
can i ask you what your symtoms are. i have pain and twiching in legs more in the right and pains and twitching in the arms shoulders and neck and sometimes face the said my nerves in my arms were great nvc, the dr said there was no fireing at all i go tommorow for the bottom. yet i have all this twitching burning sharp pain. I do not under it feels like my muscles are shaking inside. and burning i had major surgery in dec ectopic preg an have been pretty much inactive since.
MtPockets
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Thanks Robin,
You said it so much better than I could.
jattd,
If you have read many of my posts; I know that you understand where I get my strength and hope to go on fighting this terrible disease. My faith in my God and Jesus Christ is my life. My family is also very important to me. I have to be there for them during this time. They are grieving the future loss of their father and grandpa and they see the changes day to day. I try to help them understand that I am living each day one at a time.
I have 4 children and 15 Grandchildren. I have two teenage Grandchildren living with me now, because they have no place to go. Each and every day I wake to thank God that I have them in my life. Why? They are teenagers! That should say it all. They have so many questions about life and I give them the opportunity to talk with me about ANYTHING, at anytime.
Please focus on one day at a time. That is what we do and we try to live it to the fullest. We do not spend our time and thoughts on tomorrow, or next month. Each and every day you can be a blessing to your children. Please don't waste even one day, your children need for you to be strong. I know it is hard now, but time will help you focus on other things if you will let it. Please understand each of us has been right where you are right now, and we overcame those feelings by choosing life in whatever form it may be.
How many children do you have and what are their ages. Tell us about them.
Just a small suggestion that I have tried, Put a piece of paper on the refrigerator and each day look for and write one thing that was beautiful, special, loving, etc., about that day. After about a week you will find yourself looking for those special things in your life each and every day.
Even as I write this to you, a beautiful Cardinal just landed on my bird feeders just about 6 feet from me outside of my window. How beautiful they are and so great that they brighten my day by chirping and showing their beautiful colors.
Yesterday the special thing for me was when a beautiful humming bird flew up in my face on the back porch and just looked at me as if he were saying, Wow look at me, how do you like these blue fluorescent colors? Little things like that can turn a day spent in terrible pain in my wheelchair into the most wonderful day. Little things, all put together, roses blooming, a flock of birds flew over my head yesterday in a V formation, so many wonders to live to see and enjoy.
How can I focus on things like this when yesterday I was in the worse pain of the year? I have lower spinal damage due to an airplane accident 18 years ago that causes me to have chronic low back pain and sciatic pain. Yes, I have lived with this pain for 18 years. I spend many night with no sleep, sometimes even cry when it is too much to bear it seems. Narcotics do not help with the pain as I am allergic to most of them.
How do I continue then you may ask? I made a choice. That is right you can chose to be miserable or to be happy. It is your choice what you LET your mind spend time thinking about. I chose to be happy regardless of what my body is telling me with symptoms.
I know this is not something you can grasp right away, but please understand, many, many of us have chosen to look on the good things we have left in our lives and not to spend all our time pondering the worse. Only you can control what you Chose to think about. Get your mind busy with things that are good thoughts. This scripture comes to mind right now:
Philippians 4:8 "Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things."
Give it time and things will get better, do not give up.
God loves you and so do we.
Please hang in there for your children's sake and ours.
You said it so much better than I could.
jattd,
If you have read many of my posts; I know that you understand where I get my strength and hope to go on fighting this terrible disease. My faith in my God and Jesus Christ is my life. My family is also very important to me. I have to be there for them during this time. They are grieving the future loss of their father and grandpa and they see the changes day to day. I try to help them understand that I am living each day one at a time.
I have 4 children and 15 Grandchildren. I have two teenage Grandchildren living with me now, because they have no place to go. Each and every day I wake to thank God that I have them in my life. Why? They are teenagers! That should say it all. They have so many questions about life and I give them the opportunity to talk with me about ANYTHING, at anytime.
Please focus on one day at a time. That is what we do and we try to live it to the fullest. We do not spend our time and thoughts on tomorrow, or next month. Each and every day you can be a blessing to your children. Please don't waste even one day, your children need for you to be strong. I know it is hard now, but time will help you focus on other things if you will let it. Please understand each of us has been right where you are right now, and we overcame those feelings by choosing life in whatever form it may be.
How many children do you have and what are their ages. Tell us about them.
Just a small suggestion that I have tried, Put a piece of paper on the refrigerator and each day look for and write one thing that was beautiful, special, loving, etc., about that day. After about a week you will find yourself looking for those special things in your life each and every day.
Even as I write this to you, a beautiful Cardinal just landed on my bird feeders just about 6 feet from me outside of my window. How beautiful they are and so great that they brighten my day by chirping and showing their beautiful colors.
Yesterday the special thing for me was when a beautiful humming bird flew up in my face on the back porch and just looked at me as if he were saying, Wow look at me, how do you like these blue fluorescent colors? Little things like that can turn a day spent in terrible pain in my wheelchair into the most wonderful day. Little things, all put together, roses blooming, a flock of birds flew over my head yesterday in a V formation, so many wonders to live to see and enjoy.
How can I focus on things like this when yesterday I was in the worse pain of the year? I have lower spinal damage due to an airplane accident 18 years ago that causes me to have chronic low back pain and sciatic pain. Yes, I have lived with this pain for 18 years. I spend many night with no sleep, sometimes even cry when it is too much to bear it seems. Narcotics do not help with the pain as I am allergic to most of them.
How do I continue then you may ask? I made a choice. That is right you can chose to be miserable or to be happy. It is your choice what you LET your mind spend time thinking about. I chose to be happy regardless of what my body is telling me with symptoms.
I know this is not something you can grasp right away, but please understand, many, many of us have chosen to look on the good things we have left in our lives and not to spend all our time pondering the worse. Only you can control what you Chose to think about. Get your mind busy with things that are good thoughts. This scripture comes to mind right now:
Philippians 4:8 "Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things."
Give it time and things will get better, do not give up.
God loves you and so do we.
Please hang in there for your children's sake and ours.
Last edited:
olly
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jattd
listen to capt al's words of wisdom, and what beautifull wisdom it is i almost cried.
i have had severe pain from muscle spasms, had them 24/7 for 8yrs and twitchings but even though i can feel the pain and it limits my mobility along with the muscle weakness i mentally block it out by keeping my mind occupied on other things. i admit if i have a major bad day its not that easy, but if you dwell on your pain/illness it can make it feel worse. it is a vicious cycle and takes time . life is too short take al's advice and try not to focus too much on your illness and use your energy/time for your kids.
did you go to the rheumatologist? neurologist? you did not say, they will find the answer eventually as to what is wrong but it takes time.
god bless
caroline:-D
listen to capt al's words of wisdom, and what beautifull wisdom it is i almost cried.
i have had severe pain from muscle spasms, had them 24/7 for 8yrs and twitchings but even though i can feel the pain and it limits my mobility along with the muscle weakness i mentally block it out by keeping my mind occupied on other things. i admit if i have a major bad day its not that easy, but if you dwell on your pain/illness it can make it feel worse. it is a vicious cycle and takes time . life is too short take al's advice and try not to focus too much on your illness and use your energy/time for your kids.
did you go to the rheumatologist? neurologist? you did not say, they will find the answer eventually as to what is wrong but it takes time.
god bless
caroline:-D
wright
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Hello jattd
Burning pain is "good" . . . so to speak: that points to neuropathic pain, which is not part of ALS. Neuropathic pain is caused by sensory nerves . . . and not motor nerves (remember, ALS affects motor nerves). The pain associated with ALS is muscle pain (cramps and spasms for example) and joint pain. Living with pain is no fun ordeal . . . BUT the pain you are experiencing is not ALS pain.
Take care and keep us posted.
Burning pain is "good" . . . so to speak: that points to neuropathic pain, which is not part of ALS. Neuropathic pain is caused by sensory nerves . . . and not motor nerves (remember, ALS affects motor nerves). The pain associated with ALS is muscle pain (cramps and spasms for example) and joint pain. Living with pain is no fun ordeal . . . BUT the pain you are experiencing is not ALS pain.
Take care and keep us posted.
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