Anyone else diagnosed with Brachial Amyotrophic Diplegia?

Recently (11/9/17) diagnosed with B.A.D. Symptoms since January of 2016. Had emg July of 2016 indicating multiple issues with left arm and neuro raised the prospect of ALS, However, mri at same time reflected cervical issues that might be cause. Two cervical surgeries this year with only worsening of condition. Left arm/hand almost gone and right arm/hand following same pattern. Sent to U.T. Southwestern Medical Center Motor Neuron Clinic in Dallas. Emg ncv indicated severe damage in left arm, moderate in back and mild in leg. Dx on 11/9/17 was B.A.D.

Bulbar ALS?

Hi I am a 28 year old RN in Las Vegas. Unfortunately medicine here is not very advanced and we do not have very many specialist. I have been seeing a neurologist for over a month for only 3 blood test for myasthenia gravis and an RNS to be done. My symptoms are seeming to worsen. I’m guessing this all started August 2015 immediately after giving birth I noticed difficulty swallowing. It almost felt like my throat was going numb. This wasn’t an everyday occurrence so I brushed it off as stupid things.

Scared I have als

I’m very scared I have als my body feels weak i don’t want to get out of bed I cry all the time Bc I’m scared my daughter will grow up without a father I have like weird spasms in my legs and arms my arms feel heavy just typing this on my phone I have no appetite lost so much weight but none in my stomach feels lIke lump in my throat my spine gets this weird feeling whenever I move it down towards my chest my hands shake none stop my legs get tight it’s just awful I’m extremely scared my legs feel so weak like I’m walking funny I don’t know what to do people think I’m crazy but Ik my body I

Trilogy vs Bypap

My doctor is working on getting me a Trilogy machine. Right now I have a Bypap. I have a tracheotomy and was wondering what others think about the Trilogy from what I am reading is very good. From what I understand from my doctors nurse it will better benefit me than a Bypap. Is there any difference on the function of a Trilogy vs Bypap. Thank you

Anger and a Song

I have never blogged before, and started this by mistake, but I will try and see if it is cathartic. My wife is now taking anti-anxiety meds, since she was having trouble breathing and the hospice nurse recommended it. I don't know whether it is connected, since the time was coming anyway, but as she started taking the meds she lost ability to support her weight on her legs.

Drinking too much water?

My wife, a professor and classical archeologist, had her first symptoms of ALS 2 years ago. The official diagnosis came a year ago June. Her first symptoms were in her legs, and the disease has progressed rapidly. She now has essentially no control over any limbs, cannot turn herself over, etc. Her first symptoms of speech slurring started about 4 months ago, and now she is almost impossible for anyone other than me or her daytime caregiver (I still work, as a computer science professor) to understand, and even we are having problems.

What is it?! Please help.

Hi Everyone,
This is my very first forum I have ever done. I’ve debated for quite some time now about posting so here goes nothing.

Drinking with ALS

My sister is unable to swallow liquids. She has a feeding tube. She is power wheel chair bound and is power lifted into bed. She is hosting our annual Halloween party with all of our help. She has asked to have a drink or two. We are all scared to death! This could be her last Halloween as she is progressing so quickly. Has anyone had a drink or two through the feeding tube. We try to do/give her anything she asks for but are unsure about this one. She drank socially prior to ALS and have not had a drink since. Mostly due to her progression and always trying to "catch up" with the disease.

Caring for steve

Hi, everyone. Wow, a blog!! Never thought I would be a blogger, but I am going to try it out. Put my feelings, fears, and frustrations down in print.

My husband Steve has ALS/MND he was diagnosed in January 2015. Steve just had a tracheostomy and feeding tube fitted in May 2017. Now that has certainly changed a lot of things. Some for the better (his breathing) and much more for the worst. See I feel terrible writing that, but I have to be honest or there is no point writing anything.