Hello

[Robert Redmond]

This is my first time to these forums.

My name is Robert and about 2 weeks ago my brother was told he was in the last stage of ALS. He had lost pretty much all control of his legs and most of his arms/hands at that point.
Originally, a year ago, he was tested by his neurologist who told him he didn't have ALS. His doctor's best guess eventually was MG and my brother was more than relieved it wasn't ALS. But.. finally at the Mayo Clinic in Jacksonville they told him that he did indeed have ALS.
My brother is currently undergoing breathing treatments and always has to be supplied oxygen. He began having problems with his legs roughly 15 mths ago, his arms maybe 9 mths ago. Just a month ago he began to have a harder time talking and swallowing. I can only talk to him for limited amounts of time since it is a strain for him to talk.
This is completely breaking my heart.
To make matters worse, I had noticed a little craming in my left hand along with some weakness I hadn't ever noticed before a couple of years ago. Originally I just had a harder time holding my cigarette but then later it seems tiring to use my left hand to clip the nails on my right hand.
I have had plenty of muscle twitching in the past but it seems since I found out my brother has ALS and twitching is a cause, all of the sudden I notice different muscles all around my body twitching.
Between being so sad and depressed over my brother's condition, I now have the extra worry that I too have ALS and I have seen first hand what it does to someone and I'm pretty terrified.
Me and the wife were planning to have a baby but that is on hold for now. If I have the genetic version I don't want to pass this on.
I'm 40 btw, my brother is 39.

Well, a big intro to go with my hello I'll probably be visiting this forum a lot in the future.

To everyone who has ALS and reads this I am so sorry for you, my brother and anyone else who goes through this. I hold out hope that my brother could be one of the 10% that survives a long time. Despite getting diagnosed with ALS 2 weeks ago he and his girlfriend are planning on getting married this next Tuesday. She is determined to keep up his hope and do what she can to make sure he stays happy. He is so blessed to have met her. They actually met online when he was only first noticing his problem and she has stuck with him through it all and will NOT abandon him now. I love her for that

Well, didn't mean to type this much.. so.. hello everyone

 

[betsy219]

Hello Robert - My mom was diagnosed with ALS just a few months ago. In less than six months she has lost the use of her legs, her right arm and hand and most function in the left arm and hand. We are noticing changes in her voice and in her breathing now. We have no family history of ALS or any other motor neuron diseases and understand that most cases are sporadic . I personally think it is fairly common for a family member of a person with ALS to suddenly notice every twitch or strange feeling that occurs and worry about the possibility of ALS. In my mom's case - one day she could walk and go about her normal routines and the next day she could not. The diagnosis took about 3-4 months and was made after a very abnormal EMG/NCV. By the four month mark she was unable to walk even with assistance and has been declining rapidly ever since. It has not been a subtle progression at all. Several of my siblings and I have gone with her to her ALS clinic appts. and are encouraged to ask any questions that we might have. Perhaps you could arrange to go with your brother to one of his appts. and express your concerns about his ALS diagnosis and what the likelihood of it being a familial case would be. They may well relieve your mind from all that extra worrying you are doing. I have learned so much on this forum over the past few months and I am sure you will find that to be the case for you, too.

I hope your brother has a joyful wedding and that his symptoms slow down for a really long time. He obviously has a loving and supportive brother and "wife to be". Best of luck to you all.

Betsy

 

[irismarie]

your brother is lucky to be loved as he isand I hope is marriage will be one of joy and marvel.
Try try try not to let your "symptoms" overtake you? IT can do no good whatsoever to worry. just livea s fully as you can and let thnings take their course
you sound a wonderful brother to haveand i know we welcome you here as a friend
IRismarie

 

[scouse]

Hi this is my first visit and I am not too sure how to use this sight I have been reading the forum for a few months and was pretty sure I had als or one of those variations but I went for my emg this week so I am waiting for results I am now pretty certain I have als so thought I would join the sight i am sure I will feel my way around I Saw your post and will try to post this was.
I am so sorry for your brother and can also understand your fears about yourself I times w

 

[Robert Redmond]

Betsy,
that sounds very familiar of how the disease progressed for my brother.
Unfortunately, his neurologist determined he didn't have ALS and later thought it was MG, I say unfortunately because it gave him false hope and plus he may have been able to start on the medicine that slows the disease's progression that much sooner.
Like a lot of people Mr. Google has really done nothing but scare me more. First I wanted to learn about my brother's disease, once I saw that some of the symptoms where symptoms I also share I began to look them up on the internet to see if there were alternative causes but I kept getting directed to sites that talked about ALS. Needless to say that didn't help my fears.
The one good thing from searching the net though is finding this forum. Seems there are a lot of friendly people here that are willing to help calm your fears if you are just being paranoid or if you do have ALS they are willing to help support. As soon as I read a few threads here I knew I had to join. Even if it turns out I don't have ALS I can at least learn more about it here than I would randomly searching out google pages. I know there is nothing I can do for my brother but give him love and support but it still helps to know everything there is to know about this disease.

Irismarie,
I cycle through three stages at this point, one is denial, I tell myself I can't possibly have this disease. The second is terror, I am convinced I have it and I'm suddenly very scared and depressed. The third is sort of an acceptance. In this stage I think, if I don't have it great, if I do then I do and all the worry in the world can't help me so I tell myself to stop worrying but this is kind of hard.
Your advice is probably the best advice for me right now but again, its hard.

Scouse,
I really hope you don't have ALS but if you did I am glad you found these forums so early. ALS is so rare it's hard to talk to anyone about that actually knows anything (I mean in my day to day real life) The wonderful thing about the internet that is no matter how rare something is you can always find plenty of people willing to talk about it and this forum seems to be a great place to do it. In the next week or two I plan to search through a lot of these threads and learn as much as I can about the disease itself and about the people who post here and their stories. I hope to gain some information to help me and my brother and maybe later on share information with someone else that might help them out.

 

[Katie C]

Robert... certainly checking with your own doctor is wise advice, but everyone I know who's ever been connected with a PALS gets hypervigilant about every twitchy muscle or moment of weakness, so try not to worry.