Hi! I'm new to this forum. My father was diagnosed with ALS in 1999 and passed away in 2001. He is the only member of his family to have had ALS. He is one of seven children. His parents did not have the disease and none of his siblings have developed it. I'm an only child, I'm 26 years old, and...
This may be an ignorant question. My wife has been given the diagnosis of "Upper Motor Neuron Disease". She has three cousins that have "Rapid Onset Dystonia Pakinsonism".
The neuro wants to do genetic testing on my wife, one cousin, and the parent who had the mutation. I do not know what...
Hi,
This is a question for the folks with UMN disorders. Could you tell me a little bit about the timeline of how your symptoms have progressed? What started where, and when/how things shifted to other parts of your body?
I was provisionally diagnosed with HSP (hereditary spastic paraplegia)...
Until I was recently diagnosed with ALS I thought that my brother's diagnosis was sporadic. Surprise! Seven years later I got diagnosed, the month that he died, the same age. Talk about irony!
I haven't had any genetic testing yet. Didn't know anything about it until I got on the Forum.
I...
Hi,
Didn't think I would ever be here on my own. My mother died of ALS early May and I was on for her. Now I'm on for me. I started having fasiculations in my calves in late June. After they didn't stop I saw my family physician and after running blood work which was normal, he referred me...
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I'm still here regardless of the people who think I'm just anxious.
Well two things... One... I have obvious atrophy in my right tricep noticed by everyone I have shown. It is located in the exact place I've been twitching off and on for almost 3 months now. I can and will provide pics...
Last time I was here 2 years ago, I had a dirty EMG and weakness, diagnosed with ALS by the first neurologist...I went for my second EMG at a University and here's what they found...
Not sure.
Possible myotonia congenita...neuromyotonia...paramytonia.
I will be anxiously awaiting my genetic...
Okay, I need to know that I’m not the only one who “plays” with folks about ALS.
So here are a couple of minor confessions about people I have toyed with…
- Wasn’t willing to part with thousands of dollars to have genetic testing done, but at one quarterly ALS clinic visit I was asked if I’d...
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*Apologies to anyone who read this on another sub thread. I accidentally posted it the wrong place. I meant to post this here*
Hi All,
I had a previous post here about my father and my concerns with his SALS actually being FALS. I was given some really great advice but I just wanted to give...
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Hi all and Happy Thanksgiving!
I have a question for some of the forum members here and was wondering what your opinions are on this matter.
My father was just diagnosed with what neurologists consider to be "sporadic" ALS. My father has a long line of medical history on his side of the...
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