Please help with insight....I'm scared

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koopie33

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This is the third time I've posted, I am really getting scared. I have twitches all over the place, and have for about 10 days now. They thought at first that it was getting off amitriptyline, but I went back on it as soon as the twitches started, and they haven't slowed down. I don't seem to be very weak, but I'm getting cramps in my feet now. I've read that the twitches with ALS stay in one muscle and then move on, and also that they appear all over your body.....I'm scared. Can anyone help?
 

brooksea

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koopie,

Usually twitching or fasciculations start in one muscle group and remain in that area for a while and then advance to adjacent areas. For example with my husband, the fasciculations started in his left hand and remained for a couple of months then advanced to his arm, across chest to other side down to hand. The longer the twitching has been going on the more atrophy is observed. Cramping and spasms came in his hands long after the twitching started.

I can only give you an answer based on what I have witnessed with my husbands body. Others that have ALS may have a different story, I don't know. but from what I have researched, my husband has symptoms that are typical.

The reason twitches appear all over the body is because they eventually advance to every muscle group causing atrophy and paralysis. To have them appear instantly all over would not seem typical, but I'm no research scientist.
 

Midnight

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Hi koopie,

Do a search in this forum for twitching. I think you will find exactly what you are looking for. There are amazing people that have given their stories that can help you with ton's of insight.
 

koopie33

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Thank you

Thank you, jimercat.....I'm sorry that your husband is sick. I do have a fairly certain diagnosed of fibromyalgia that I've had for a couple of years. Could the twitching and "perceived weakness" have anything to do with that?
 

brooksea

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koopei,

I too have fibromyalgia and have occasional twitching ( which I am much more aware of now - LOL ), and I've been a wimp for some time! :mrgreen: I used to have to run hot water over my feet to get the cramps out. I really think you do not have ALS. Have you seen your Rheumatologist?

Here is a link that may put your mind to ease:

http://www.fibromyalgia-symptoms.org/fibromyalgia_dysmen.html
 

freddiesnetty

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jimmercat,
Your husband and mine are exactly the same in progression, my husbands' started the exact same way, it is now in his legs and neck.......the trunk muscles are gone and arms. His neck is now not "working" the same. I wish I could take this away from all of us and we would be on the "Where to vacation" forum........hee hee. I know God is guiding me so I WILL keep on going.
Annette
 

myooshka

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Annette yes sometimes I can't even believe it when I'm on here. It would be nice if we were on a forum discussing the hot holiday we were planning on taking this winter, bummer. These cold Canadian winters!
 

freddiesnetty

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I want you to know that my 18 year old daughter is praying for you and feels so bad that you are going through this with a newborn,she has a daughter 2 and 1/2. We were shocked about the pregnancy at first but I think that is part of what keeps my husband going. I mentioned her praying, because it has been along time since she has done that.....she is in denial about her fathers illness and HATES it. Our prayers are with you daily........if nothing else thanks for inspiring my daughter........when I get on here she used to say oh that again, now she asks if you have any new posts...........Thanks Again for the inspiration for her!
God Bless You!
annette
 

CindyM

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Funny how close you become to folks around here, isn't it? And I am not surprised we share what happens here in the real world. My daughter belongs to a great forum-nice folks plus they discuss happy issues like parenting and family life. I have learned, when she quotes a friend, to ask if this is an on-line friend or somebody I have met. LOL. Shows the ower of the internet, though.
 

myooshka

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I am glad there are people praying form me. It's really tough somedays alone with my little one the most diificult part is that my illness has really effected my memory, thinking, lately that's what I find the most difficult to deal with. The year before I got ill I lost my dad to suicide and my mom to cancer they were only 54 and 55, Sometimes I feel so alone but I just keep plugging away everyday for Jacob. I have not had an easy life but I always moved up and forward and stayed positive. I think the hard times prepared me to be this strong because most days I really don't know how I do it. I am always patient loving, happy for my son, he deserves the best start in life. I am really proud of the job I am doing with my son. I am a super perfectionist and I've had to give that up, it still drives me nuts I can't be the perfect mother but is there really such a thing? In some ways I feel lucky, I met a lady on here whose daughter has als and got it just before she was pregnant. By the time her daughter was born she couldn't walk and barely hold her, now she is having troubles breathing and I don't think she has long. Her story was similiar to mine but she is a lot worse off than me. Her mom has cancer. I couldn't believe how close her story was to mine. You can read about her at kelpkeri.com. You must hace some cute grandbabies. I have a sister that lives in Chicago she has two little boys her husband is african american and I swear little babies with their curly hair and dark skin are so beautiful. She is 24 she was just diagnosed with rheumatoid arthrits, our family has had a real rough patch, we are strong though we always get through the difficult times and I hope you are holding in there too.
 

vicki

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a friend of ALS patient

Dear Jimercat,
I came to this website looking for suggestions on what I might say/not say when I visit a friend who has ALS. Is there any gift that would be helpful? I have not seen her since her diagnosis, as I don't live in her area any more, but plan to visit her in a day or two.When I saw that you were from Monroe, Ga., I felt that I must have come to the right place for guidance as I grew up there in the 50's and 60's. Any suggestions will be much appreciated. I know it will feel sad, but I want to bring some cheer into her life if I can. I am so sorry about your husband. God bless you, Jimercat.
Thank you!
Vicki, now of California
 

MtPockets

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Koopie, do a search on the search link above for BFS and see if this may sound similar to the symptoms you described.

God Bless
Capt AL
 

Al

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Hi Vicki. Welcome and sorry no one answered your question. First of all your friend is still the same person inside. How far she is along in her diagnosis could dictate how she feels about talking about the illness. As for gifts it once again depends on how far she is along and whether she has bulbar symptoms. My friend is coming next week and bringing Alaskan King Crab Legs. They have to crack em but I sure can eat em. My other friends bring me books on CD because I can't hold a book anymore. Hope this helps a bit.
AL.
 

brooksea

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Vicki,

I'm sorry I haven't looked at your post til now! Have just popped in shortly for the last couple of days due to being so busy.

You would not believe the Monroe area now! We're BIG TIME! LOL

As to your friend, AL is right, they are still the same person they've always been. Just be yourself and let her be herself. Females tend to let it all hang out, so go with it. It's OK to cry, it's Ok to laugh. Just make sure you are genuine when you offer any help, you will then be a true friend. Don't be afraid to say the wrong thing and don't avoid the subject of ALS unless she says she doesn't want to talk about it.

Cards, books, flowers and such are great! But, a PALS really needs friends that truly care and are there for them! That's the best gift of all...

I hope I am not to late in this reply Vicki!
 
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