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 email@example.com
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.
I just was diagnosed with progressive bulbar palsy August 2016 although I've been having problems with my speech since maybe November 2015. My speech is getting worse, have weak facial muscles and tongue movement but otherwise feel fine. Penn medicine neurology said I have bulbar palsy and suggested I start rilutek that's it works pretty good for bulbar patients. I'm still hoping it's not ALS. Should I take the medicine? I don't know where to go from here. Any suggestions would be so welcome please!
Hi, I'm Kali I am 26 years young, I am married and have three children. My mother started having slurred speech 8-9 months ago and in May found out she indeed has ALS, say what? Only thing I knew about ALS were the bucket challenges a couple years ago! She has the bulbar onset ALS I believe?
Hi I'm a 45 year old male. Approximately 2 months ago I got a strange, stiffness in my Right calf that just hasn't gone away and has gotten progressively worse to the point of hampering my normal walking and is causing some pain around the ankle now. It's also started in my left leg between the calf and the ankle. This is all accompanied by severe fasciculations and spasms, especially at night. These tics are occurring throughout my body. as well.
It has been 8 months since my mom was diagnosed with ALS. I lost my dad when I was 20. He was sick for a long time and even as a child I knew that I would have to prepare myself for losing him at a young age. I just prayed that I would when the time came I would be old enough to take care of the family. You see, my mom is an immigrant and her English is not the best. She was a stay at home mom her entire life. My dad took care of the finances and made all the big decisions. So I prayed that when he left us I would be wise enough to make those decisions for us.
I will be straight and thankful that als was ruled out by my neurologist at Cleveland clinic... That being said she believes I have stiff person syndrome which is 1/1,000,000 dx so I am alone as my body fails and I slowly lose ability to move, breathe and function.... Sadly with great pain. I am being transferred to the CC movement disorder clinic but really no good place to find others suffering how I do. I am mostly following to learn some adaptive equipment and other options that may help.