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suebo

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Hello,
Is there any time frame that one can feel fairly confident that they don't have an MND with twitching and no weakness? I have been twitching almost 5 months and have not progressed beyond body wide twitching--esp in the arches of my feet. I also get feet cramps with certain positions. I had my reflexes, etc. checked about 3 months ago--all normal. Was just told benign twitching. I can walk on my heels and toes with no problemswalk 1 hour and do 100 calf raises per day. I don't notice any increase in fatigue. Any info?
 

ltr

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Jamie did research and found that the magic number is 5 months. If there is twitching and weakness is to follow, it should happen within 5 months. Otherwise, probably and hopefully, they are benign. Good luck. Leslie
 

brooksea

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Suebo,

This really sounds like you are in the clear. If you haven't experienced atrophy and weakness by now I would say you are in good shape. But, I'm not an ALS neuro.

If you can do 100 calf raises a day and experience no change in energy extended to do them, then hooray!

I wish you well.

cj
 

Lorie

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Here It Is Now

My brother Timothy had symptoms for seven years before they suspected ALS three years ago. Diagnosed two years and three months ago. Up until last June he could function normally, then suddenly he lost the use of his arms and hands, his neck droops. So he went over two years before drastic changes occured. Before, he had twitches and cramps, maybe not all symptoms at one time. But done everything. Every case has its own journey. His sounds slow moving. I hope it is.


Lorie
 

suebo

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Lorie,
What made them suspect ALS 3 years ago? What symptoms had he had before that?
Thjanks for your response.
 

Lorie

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Reply tp Suebo

My brother had the Muscle Cramps and Twitching for seven years before they suspected ALS, at the time he lived in WV. Two years and three months ago they confirmed it. Last June he lost the use of his arms and hands and his neck droops. We moved him to AL in January to take care of him, he had to give up his whole life there. But we had to they were going to put him in a state facility.

Two months ago his MDA Doctor had a biopsy done thinking it may be a Myopathy.
No such luck the test confirmed ALS. Some people have slower moving ALS. Haven't you read about any of the people that do. Chris Pendagras with Ride for Life has had it for 14 years. What about Steven Hawking-4 decades.

That's why we cant give up, Like I said it has its own Journey with each individual.

I have researched it alot myself in three years, anymore questions, just ask!

The coincidence is, since a year ago in March, I have had the same symptoms!

Anymore questions, feel free to ask.

Most people with good reason fill suddenly doomed. But, thats why we have hope and doing something about it. I love Timothy with all my heart, I told him My arms are his. I do everyting I can for him. I am also an ALS Advocate.


Lorie
 

ltr

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Lorie - you are such a wonderful person. Thanks for being here to help with our questions. Have you thought about this being familial? It has to start somewhere and with having some symptoms maybe they would do the blood test for you. I guess I'm not too savvy with how that works, but maybe you should give it a try. Leslie
 

suebo

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Thanks for all of your responses! I feel much better.
 

Lorie

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To ltr

You almost made me cry. My Brother says that I'm his Angel without the wings. I am so touched by all of you and him, he is so positive. I will be here any time you need me. That goes for anybody else too!

P.S. I don't have time to cry, trying to Arrest ALS. :-D


I asked my Brothers MDA Doctor about Familial ALS, we do not have a history before Timothy. The Doc. said any sibling or his own children (he don't have any) born after him could possibly carry the gene or similar. I have been seeing a Neuro. He has put me on the road. I was going to put him on the road, he got to me first. I kept hearing teh same as Timothy had all those years. The Neuro. Diagnosed me with Periphrial Neuropathy and BFS. He wants me to se a Specialist/Scientist that studies underlying Neuro Muscular diseases.

I'm not worried about me right now, have to work for Timothy. I really wasn't going to tell about my problems, O'Well here we are!
 

Lorie

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To Annmarie

I had read and if I can find it among the tons of articles I have saved. Within years either someone in ones family will have it or you will know someone who has it.

When the Doc. supspected it three years ago, I had heard of it as "Lou Gehrig's Disease" but I didn't know anything about it. I immediately went to the computer to read on it.

I was totally devastated, horrified and immediately went into grief. After all we have been through as children and adults. I still wake up and ask myself is this really happening? unfortunately it is. We just have to find ways to deal with it. I channel through good things. It can definately bring out bad things if you let it.

I'm just glad I have my Brother is home,so I can help take care of him!

He has given me so much to my spirit. I am blessed to be his sister.

Lorie
 
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