The monster in our family started several years and generations ago. We have lost several family members to ALS. On May 5th 1989, ALS took my Dad. He was 37. Six weeks later, it took my Dad's 1st cousin. He was only 29. After 28 years, the monster has reared it's ugly head in our family once again. I have a cousin, she's 33 has a baby that will be 1 in November. It's so completely not fair. Our family has been a subject of studies in Boston with Dr. Brown. I guess I finally decided to blog so that I can make friends, find support to help my cousin fight this battle.
Hi my name is Ashley I'm a 26 year old registered nurse. I'm sorry I'm not quite sure how to navigate this site yet. About 3 months ago I started having sensory symptoms and was concerned about MS. Had a clean brain MRI and let it go and trusted my neuro. Starting the end of September my first symptom that worried me was a feeling of heaviness in my right arm and now my right leg that has only gotten worse over the weeks.
My dad was diagnosed with ALS about a year ago while I was living in out East and they were in the Midwest. I moved home to be close to family, help my mother (as she is helping with my dad and brother with Cerebral Palsy), and spend time with my dad while he was still in good health, or as good as can be. Now that I'm home, I have severely struggled as his condition and it's progression is much more obvious to me whereas living away from home I was more separated from the reality.
I'm currently beside myself and would like your opinion please. I have a strong family history of mnd. My father, grand father, auntie and cousin all died within 9-12wks of diagnosis. Very rapid progression....
Hi, my husband was diagnosed with bulbar onset ALS in May 2016. I have noticed that he has started sneezing again and snoring. This may sound a silly question but do you think that is a good sign? He has been doing his own Lunasin trial for the last 3 months.
Hi everyone! My name is Lorraine. This is my first time posting or finding this forum. I'm going to be honest, I'm depressed. I could really use a friend, someone who has seen SOD1 first hand. Maybe a caregiver, who has also lost a family member.
A little about me... I'm 30, and SOD1 runs in my family. The most recent loss was about 7 months ago.
My personal email is firstname.lastname@example.org
I got my test back and was wondering if I could get some help understanding some of the results:
Sensory conduction studies: Right and left sural latencies show no response
Late responses: Right and Left H-reflex latencies show no response
I had the test done because I was involved in a MVA and injured my neck and lower back.