Hi everyone new here, however I've read posts for the last 7.5 months here and the bfs site. While I'm not looking for a doctor or expecting a diagnosis I am looking to share what I'm going thru at this point I'm back to square one. I have questions that I can't seem to find answers to do to maybe wording wrong in Google. So here goes.
When it became apparent that more research and advocacy was needed to care for victims of Lou Gehrig’s disease, the ALS Association was founded in 1985. It is currently the only national non-profit organization fighting ALS on every front, including global research, providing assistance for people with ALS through their nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships.
I am a 23 year old male. Had surgery about 5 weeks ago and have been having very scary symptoms ever since. I have had weakness in left arm and fatigue in my legs. Calves get very sore when walking not even after that long. I also experience numbness and tingling in my left leg and frequently get fatigue pain in my arms. I have had some twitches and I cannot stop thinking this is ALS my vitamins are all good aside my D being a little low and I need to hear some feedback.
Hi, I just found this site today and am glad to have found you.
I have read a lot where they say it means nothing but that isn't true. It is something. I have read many studies where people only present with fasciculations. Which means they do mean something. I would wait 6 months after fasciculations to get emg. I read from telemg website that two months is long enough to see neurogenic changes on emg but earlier may not show up. Also fasciculations are an abnormal occurrence in themselves. After labs have been exhausted not explaining them it come down to ALS or BFS. Which is scary in itself. So what are your chances.
Hello Everyone! After over a year, my Mom is finally diagnosed with ALS. I know I don't have to say here how the whole family feels like... But if anyone of you could recommend a clinic/center, I would really appreciate. This is the major decision at this point. We live in NJ. A neurologist is recommending Columbia Univ. in the city but i have doubts... I see that there is a clinic in N. Brunswick but would like to hear your input. Those of you who live in NJ/NY PLEASE, PLEASE let me know about your experience. Thank you in advance!
Hello, I started Riluzole last Monday. By Thursday, I could not lift my right leg or put my weight on it as I did a few days before.
I also had an increase in fasciculations. While I understand that it is unlikely from the medicine but I wondered if anyone else had this experience.
I stopped the med on Thursday and feel a bit better.
My husband was diagnosed with ALS 2 years ago. He can no longer stand and has lost most of his hands/arms function. He can still talk and eat, which we are very thankful for. He uses a Bi-Pap when lying in bed. He has a Permobil power chair and we have a Hoyer lift, that I use to transfer him. We use a full body sling with a commode cutout. We have a hospital bed. I am his primary caregiver.
Hi, I am Zülal from Turkey. I'm studying product design. My final project is about well being of patients with ALS and caregivers. I want to design product whould make easy life of patient with ALS and caregivers or I want to improve exist product. I am in research part. Could you help me in the project ? Any information is so important for me. Which kind products could help you in yours daily life ? Do you imagine a product not exist would help you in your daily life? Do you have some problems with products you use?
I've suffered from ALS anxiety for about 4 months off and on, and now I noticed a little indent on my left arm. I'm dominant on my right arm but these little issue is cause so much anxiety. I've been lifting more with my left arm lately. There is no noticeable weakness. But it's just bothering me! Please help