signs and symptoms

Survey for People with IBM Reports Early Findings

Investigators conducting an online survey launched in January 2013 to gather anonymous information from people with inclusion-body myositis (IBM) are now reporting preliminary results and are asking the original respondents to complete a short supplementary survey.

Study Probes Impact of Early-Onset MMD1

Communication difficulties, social role limitations, problems with mobility and walking, and cognitive impairment were the most frequently mentioned themes in open-ended interviews conducted with people affected by congenital-onset or childhood-onset type 1 myotonic muscular dystrophy (MMD1, or DM1) or their parents.

MG: Can the Immune Response Be Tamed?

It can start with nothing more than a drooping eyelid or a slight slurring of speech, either of which can come and go and improve with rest. But it can progress, often gradually over weeks or months, to affect all the voluntary muscles, including those controlling breathing. Weakness may be minimal early in the morning after a good night's sleep and worsen throughout the day, especially after periods of activity.

An ALS Biomarker? Brain Imaging Technique Pinpoints ALS, Disability

Advances in technology have led to greater sensitivity in imaging techniques, increasing scientists' ability to see into the brain and spinal cord. Now, a research team reports that a technique called magnetic resonance spectroscopic imaging (MRSI) can distinguish people with amyotrophic lateral sclerosis (ALS)  from people without the disease.

ALS Registry FAQs

The federal government has released preliminary details about the new National ALS Registry, which will be launched in late 2010. A list of frequently asked questions (FAQs) about ALS and the registry can be viewed online at www.cdc.gov/als.    

ALS 'Lake Link' Tenuous

Recent media reports have raised the question of a possible link between an increased risk of developing amyotrophic lateral sclerosis (ALS) and living near Lake Mascoma in Western New Hampshire.

The Union Leader in New Hampshire and other news outlets have reported that the risk of developing ALS is 25 times higher than average for people living around Lake Mascoma, located in Enfield and Lebanon, N.H. The source of this statistic was not explained.

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