My Uncle passed away from ALS 22 years ago at the age of 22. 8 years ago, my father was diagnosed with it. He is now on a ventilator and more or less bed ridden. Other than the nurses that come in everyday, my mother takes care of him. She has done remarkably well considering the fact that she doesn't even like the site of blood...she can change his trach. In December of 2001, 2 days after my 22 year old brothers birthday, he was diagnosed. I think maybe 3 weeks after my brother was diagnosed, my fathers mother, was diagnosed. It just seems that my whole world has come crashing down. I am extremely close to my brother. Being the only girl with 4 brothers, I was always daddy's girl. I came to grips with my father having it, but its hard watching it all over with my brother and my grandmother. My uncle's daughter has been tested (we haven't heard anything yet), and my 21 year old brother has been tested. I myself don't want to be tested because I don't want to worry. I have 2 daughters and I am scared to death. My husband is very supportive but I think that its hard for him to understand everything because he has only known my family for 3 years. If any one else has gone through it or is going through it, I would love to talk to you. Its easier when someone else knows what ur feeling. Please reply to me!!!

[This message has been edited by moderator2 (edited 06-16-2002).]

I hate to ask you this question. But what were some of their symptoms that made them go get tested initially. I have had no extension in my right leg and it has completly atrophied. I went and got an emg test and there was no message getting from my brain to my leg. My health is fine cept i can't use my quadricep. There are no tears and MRI's of my mid lower and thigh have come up negative. I'm going for one on my brain tomorrow. Does any of this sound familiar to you?? I'm sooo sorry for what your going thru. I feel so bad.

Sean

For me, it's hard to imagine what you're going through having so many cases of ALS turn up in your family alone. I do however know how hard it is, with my uncle having it and all. There's not too much I can say.. i`m not good when it comes to things like this.. always considered ALS one of those 'hard things' to talk about for me.. I wish you and your family the best though, Take care of yourself.

-Nicole

Sean-
It happen the same way that urs did. It basically started with an injury (thats what set it off). For my father it was his knee. He started limping and noticed that he couldn't lift his right foot up. It progressed from there. My brother fell and sprained his ankle the morning of my wedding. After that, he wasn't able to lift his right foot up (he couldn't point his toes to the ceiling). I knew instantly that he had it because he was walking just like my father. They had the emg done also. It all sounds familiar to me. If you need to talk...im here.
Cassandra

Nicole-
I know that its hard to talk about. Its hard to deal with. Just understand that if you ever need someone to talk to or to just vent, Im here and I understand.

Cassandra

I'm sorry to hear about your familly. My father has ALS, he's had it for about three years. I think the worst thing is (aside from his suffering) that his DR's can't seem to help him they just like to monitor his progress and no one can do annything for him, or so they say.Do your reaserch on treatment's for ALS. I found that there are treatment's that are not avalable through your DR or not fda approved. I got my dad on a treatment with cantron about three months ago (wich his DR'S know nothing about but they oked it)And it seems to be having a possitive effect on him maybe stopped the progress. Do check your serch engine becaus the DR'S don't know everything.And as far as people passing on I do bielive they are still with us we just need to change the way we comunicate with them once they are gone from the fisical world.Just be open to it and wath for signs, one vallidation can change your life....Be well..TODD

Todd-
I think that my father maybe too far along for anything right now, but I will definetly look into to for my brother. When my father found out that he had it, he started taking vitamins along with the prescription pills. He also took Creatine. The doctors think that the Creatine might of had something to do with why he progressed slower. I think its all in the power of the mind. I have heard some other people talk about Cantron, Im going to definetly check out tho. Thanks for the info. I hope all is well with ur father.
Cassandra

So sorry about your family suffereing with ALS. My Dad had it years ago. Seems not much progress has been made on it.

My Dad lost his voice first. I remember one test the Drs gave him which had to do with his toes. They said his toes didn't react to his stimulation. It seemed that is when they decided he had ALS. Such a strange disease.

This is my first post here. Wish I didn't have to. My dad was first seen by a neurologist last Friday the 5th of July. He saw no test and within 15 minutes told us that he thought he had ALS. We went today for the EMG and he says it looks the same as what he thought the other day. My question is, how can this doctor make such a diagnosis so quickly? He watched him walk, which is by walker, took his blood pressure, what's been going on since symptoms started then said he looked like he had lost muscle in his arms. This doctor had never laid eyes on my dad before Friday. I have a real problem with all this being diagnoised so quick. We go back Monday for him to give us his "official" diagnosis but we already know what that is going to be. He then is making us an appointment with a specialist on ALS for a second opinion. I don't want my dad to have this disease and know I am trying not to face it right now but I don't want to give up hope either. My dad is 73 and has always been the picture of health. Started having leg problems less then two years ago and had back surgery one year ago next month. He had spinal stenosis then. I am very upset with this doctor telling us this before he even has a blood test or looks at MRI's or anything. Just by what he saw in his office for 15 min. Can anyone help me out with this? I am devastated. I feel like my whole world has come crashing down and don't know what to do. I need a lot of information. Please help.

[This message has been edited by tmoore (edited 07-10-2002).]

The first question that I would ask is if this doctor has treated or diagnosed anyone else with ALS. When my uncle started having symptoms, our family doctor immediately sent him to Mass General. They diagnosed him there. That was 13 years before my father was diagnosed. The same family doctor knew right away what my father had but sent him to Mass General to be diagnosed. If the doctor has seen cases of ALS before then I would feel confident. But if its only been 2 or 3 before your father, I would wait till you had blood test done. Just like with pregnancy....nothing is for sure until the blood is drawn. What does your father say? I think that they diagnosed my brother before he had the blood test done. He had an EMG and stuff before and they pretty much knew then. But then again, these are ALS specialist. I had an EMG done the other week and the guy that did it told me that he would be able to detect ALS (I was having it done because of an accident). My father said that he wouldn't be able to tell without other tests. I would get a blood test done as soon as possible. I don't know if this helped any, but, if you need anyone to talk to, feel free to write. I totally understand what you feel.

Hyper-
I am sorry I didn't see your reply before. It is a very strange disease. It effects everyone in a different way. Wish there was a cure or atleast the stem cell would see light.

Sandra143- Thanks for the reply. This doctor is a neurologist in a pretty good size city. I feel sure he has seen other cases. Surely. My dad did have the blood test last Friday before we left the doctor's office. Why is the blood test so important? Everything I've read on the internet seems to say that the EMG is the big test for ALS. There are so many other neurological diseases out there that mimic the same symptons that I was wondering how they be so sure. Like I said I am hoping for a miracle here and for this doctor to be wrong. But I'm afraid he is not. Thanks for listening. It does help to talk to someone that knows what others are going through. I have so many questions about this and don't know who to ask.

tmorre-
I think that the blood test is so important because they can tell if you have the gene or not. Like I said, its sort of like a pregnancy test. You can't tell for sure unless you have a blood test to prove it. I know exactly how you feel. The five stages of grieving....denial is the first. I didnt want to believe that my dad had it, now my brother and grandmother. But, it gets easier, trust me. Its like my mom said...sometimes its easier the first time. Like with my uncle...it was easier in a way for my family because they didn't know what they were up against. Now, being through it, its harder cause you know whats going to happen. Some days are going to be harder than others, but don't take any day forgranted. You will get through it I promise. I will be here to help you in any way possible and if I can't help you, I will find someone that will.

Sandra143
Thanks so much. If the blood test is only looking for the gene to see if he has the heredity type we already know no one on either side of his family tree has ever had this awful disease. He is the rock of our family and I too am the only daughter with three brothers. I feel like I have been hit by a truck. My whole world has come to an end. I cry 24-7. Can't think of him without breaking down. I'm 44 and have three children with the youngest being 13 so I have to go on with the everyday stuff around here for them. I am the only child to help with the doctor's visits and running the errands and so on. Thanks for listening and please tell me things I need to know about this stuff. Did any of your family members take the medication that's on the market? I read it is only good for about a three month delay but I'll take anything. Again thanks so much for listening and responding to my messages. It is a great help since no one in my town has ever had this disease so I have no one to talk to about it. His doctor is an hour away but from first impressions I'm afraid he is not going to be much help to us. I pray I'm wrong. But I'm afraid he is going to just send him home to die. What can be done other then just wait for all the bad stuff to happen?

tmoore
I think that the only thing that you can do while you wait is to enjoy every day that you have with him. I think my father has tried everything that he is able to. I remember when we first found out that he had it, he was taking Creatin. His doctors felt that this had a lot to do with why he was progressing so slow. Just keep your chin up. Better days are ahead.

I am so sorry to hear of your ongoing tragity. My father was recently diagnosed last Aug. of 2001. It started in his legs and I fear soon he will be in a wheel chair. since then it has moved into his arms and his breathing has diminished greatly. There are no words to express of how things are going for you and your family. I can relate, but not to that extent. I hope and pray for you and your family that no more harm or disease may come to you. Keep the positve attitude and hope going. I am the part time caregiver for my dad, along with my mother and so far it hasn't been too bad. I am not looking forward to what I have read and heard. It hurts my heart to think that perfecly good people who have everything going for them has this happen. Again, My thoughts and prayers are with all of you.

This is a message for information only. I recently read an old copy of 'The Townsend Letters to Doctors', a magazine that publishes research papers on a wide variety of disorders. This particular copy had an article on the research a man had done when he was diagnosed with ALS. The conclusion he came to was that the reason the disease was flourishing in his body was because his body pH was too acidic.
He removed all 'acid ash' foods from his diet and within two weeks was seeing very positive results. He maintained this diet and his mobility returned. He does not claim this as a cure but for him it gave him his life back.
Much research has been done on the importance of maintaining a good pH balance in the body's bloodstream. They have found that bacteria, viruses, etc thrive in an acidic environment. Unfortunately the medical community does not pay too much attention to the pH balance or to our diets when it comes to chronic diseases.
I personally know several people who have regained their health by altering their diet to accomodate a better pH balance.
My prayers are with you.

Just to let you all know...I am Sandra143...I have a new email address and they mailed me a new password to the old address so I had to create a new name. Slaughter, my thoughts and prayers are with you and your family. This disease is very devestating. Its so hard to watch someone go from walking to a wheelchair in no time. Even though its struck my family 4 times, its just as hard even if it was once. If we all stick together, we can help each other get through this "monster". I am here for everyone. Thank you all that have listened to me vent. I am greatful that I have some place like this to come to. Love to all.