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icecubed

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I was wondering how frequently you have seen individuals come here who are later diagnosed. I see endless pages of people who worry about their symptoms (in all honesty I found my way here because I am worried about my own symptoms as well). But, for all of the individuals who come here worrying about their symptoms, is it regular for you to see many ultimately diagnosed? Just curious for those who are regular members and have an idea. Thanks for your time.
 
Mod note- Moved to DIHALS

I think, in the 2.5 years I've been on this forum, 8 or 9? However, those folks had already been told by a doctor/specialist that they had something neurological going on.
 
I have been around sine May of 2016 and I have seen three. My husband counts as 4 and I came here because he had an EMG that was highly suspect.
 
I agree the number is very low and that those people came here after evaluation and testing. Probably 2 or 3 times that number return and report a diagnosis that is neither MND or anxiety. In some of those cases it seemed they delayed their diagnosis by focusing attention on their ALS concerns rather than letting their doctors do their jobs.

I know my join date makes it look like I was here long before the doctors told me anything. I am FALS and I came here when my sister was diagnosed
 
In my case, I've only seen 1 since joining the forum in May, other than my husband. With my husband, he had already been told by an ALS specialist that he suspected he had it.
 
Thank you, icecubed, I was wondering the same thing! There seems to be a lot of trough traffic of highly anxious people who thankfully are in the wrong place.
 
Had I not been diagnosed with ALS I would never have found this forum.
Guess I'm not a "doom and gloom"er.

Angie
 
Likewise for me. I only found this forum after being diagnosed with a “definite motor neuron disease, probably ALS”, and then later revised to ALS. I was seeking support.
 
I found this forum after I was referred to Mayo for a "suspect" EMG. Mayo's EMG was also dirty but, at that time, I was only "possible" because I had good strength in all areas. I think it took another six months for probable and another three for the diagnosis BUT all of my EMGs were indicative of motor neuron disease. Most of the people I've replied to have either clean EMGs or EMGs that point to something other than ALS. I've not seen any with a perfectly clean EMG that came back if that EMG was performed by an expert.

I've not seen one person with only twitches that went on to be diagnosed.
 
I found this forum after my neurologist told me my symptoms were consistent with an ALS diagnosis.

I did not start posting here until after I was diagnosed with MND.

Steve
 
I agree we could probably count them on two hands, the ones that have not already been placed in the "some neuro disorder" category.
 
Thanks for the replies everyone. I think your insight really helps put things into perspective for those of us who are unfamiliar with ALS. There is a lot of great knowledge on these forums, and I hope others appreciate as much as I do you taking your time to help inform the wide range of people who participate on these forums.
 
Somewhat off but sort of on topic, you even have to be careful with “ first symptom” stories out there because they sometimes leave a lot out. For example, “Before I Say Goodbye” author Susan Wendle Spencer’s first symptom looked to be atrophy in her hand. Read further, and she was actually having trouble yanking her tube dress up too- weakness was present, not just atrophy.

I am waiting for that forum moment when someone says “But so and so was diagnosed and it started with just twitching!” when that was so not the case.
 
Tinnitus and ALS?

Hi everyone. I was wondering if anyone has experienced tinnitus as an ALS/MND symptom? If so, was it an early or later symptom? Was it intermittent or constant?
 
Mod note: Merged threads. Please post on your original thread. Please continue posting here, as you have not received a diagnosis of ALS/MND.

icecubed, can you please explain your interest? While this forum is a place for discussion and possibly getting answers to do with the diagnostic process, and discussing a variety of issues arising for people who have ALS, it is not really somewhere for people to satisfy curiosity. My concern here is that you are worried about having ALS and are not seeking proper medical attention.
 
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