Hello everyone. About 9 years ago my aunt was diagnosed with ALS and passed away about 1.5 years after her diagnosis. As far as I know she is the only person in the family who has had ALS. However my great grandmother died from an unknown cause and it was suggested by my Aunt that she probably had ALS as well, which has got me worried that it might be familial although no one else in the family has gotten it thus far.
Hello,I'm new to this site and have read forums from you guys and wld like yalls opinion. My dr in houston baylor college of medicine diagnosed me with benign cramp fasciculation syndrome, never heard of it much and I'm wondering if they'res just saying that Bc I dont show signs of upper or lower motor neurons. Im 36 years old now, I've had fasciculations for over a year now and my emg just shows fasciculations but my feet and hands cramp up sometimes. My arms sometimes do also. Ive been really scared and it's affecting my marriage and my daily life Bc in my mind I feel I have als.
Hello, I wanted to ask a few questions, I have worked out for years, awhile back my left bicep started twitching, mind you I worked out hard I sweat alot and I never really ate much or hydrated properly, well when I went to the academy for being a correctional officer, my arm never twitched and that was 6 weeks but I still worked out the same, so when I came back home the twitching started back and it wouldn't stop, well recently I went to the ER a month ago for elevated heart rate and during that time I couldn't work out so I lost alot of weight, well now I notice that the arm I twitch in
Hello, I work out alot for years and awhile back I noticed my bicep twitched, well I kept working out and for six weeks I went to the academy and it didn't twitch and that was six weeks, I kept working out the same, mind you my nutrition wasn't great my caloric intake was very low and I didn't drink alot of water and sweat alot, well the twitching in my left bicep started back and woudlnt stop for months, I recently went to the ER with an elevated heart rate and for a month I couldn't work out well I lost alot of weight, but I noticed that my left bicep became flat like a runway the head of
I am so angry this morning. I was just told by the ALS Clinic at the VA in St. Louis, MO. that my husband will not have access to the new ALS treatment drug "Radicava" that was approved by the FDA in August do to the Fiscal year funding which will begin on Oct. 1st. The drug is in the warehouse and available, but if the order is written to the pharmacy for the drug it will be sent back due to funding. I wanted to get this out there so if anyone wants to join me in fighting this development. I have called and talked to our local PVA rep and got the ball rolling.
I lost my love of my life we were together 32 years when ALS was diagnosed we did a lot of research and I had to except so much. I sure cried a lot thinking there was nothing I could do to change what would be . But through all of this my husband fought this as long as he could to be with me . But watching a strong man 6'2 fade away and in the 3 years it took him down fast. I was not feeling well myself but had to be strong as I could for my husband . I feel so guilty sometimes because I was so tired took care of him 24/7.
This is my first time ever doing anything like this but you guys seem very helpful and I was hoping you'd give me some of your opinions.
About a 8 days ago I started having slight tremors in my hands and legs but that went away as the anxiety got worse strangely, anyway of course I think I have als, my left arm feels heavier than the right, i have hyperreflexia but it seems everyone in my family does so I'm not too worried, I have no muscle twitches and cordination is spot on, my questions are,1. does als allow sore muscles to go away normally
My husband who is currently in a wheelchair started catching a cold and started using sinus Sudafed 12 hour main ingredient Pseudoephedrine HCL 120 mg, to help stop his runny nose. After taking this product for 2 days he had noticed that his toes on his right foot, which he could not move at all, was NOW able to wiggle them slightly.
He said I BS you not.
I would like to donate my body for Bulbar Palsy research when I die. Does anyone know how I do that?
I read about your experience with a quantum edge wheelchair. The problem is the I didn't read it soon enough!! I just got my quantum edge 2.0 a month ago and I hate it!. I had, well I still an invacare storm and I love it? I have it from like 7 years, but it started to give me some problems and I thought it was time to get a new wheelchair. I live in a nursing home in Chicago Illinois. So I started the process and they gave me this one!! Just to think that I have to be with this chair for at least 5 years in this small rooms, elevators, going to college. I want to cry!!