My mother is only 51, was an avid walker and a generally healthy person until she turned 50. She began with coldness in her fingers which was diagnosed as Reynaud's disorder, no big deal. Then she began to feel fatigue, trouble swallowing, trouble moving parts of her hands, thickening of the skin on her hands and high muscle protein counts in her blood. She was thought to have Scleroderma and treated with steroids and immune suppressants but continued to lose strength, weight and control in her hands. She had various steroid infusions when the initial treatments didn't help and was scheduled for a muscle biopsy to look for Polymiositis. The biopsy was what led her doctor to believe she might have ALS and she was scheduled for an EMG which still didn't convince the neurologist that it was definitely ALS.
My mom was diagnosed with probable ALS on June 30, 2011. On July 1, 2011 she was rushed to the hospital with side/chest pain and upon arrival was found to have double pulmonary embolism and clots in her leg. We have absolutely no family history of clotting disorders and she'd been working full time and still walking, driving and keeping house. She was not at risk for clots in any way and I haven't heard a lot about PALS with clotting problems.
My mother has never exhibited many typical ALS symptoms. She's never had any twitching or cramping. Her EMG results have never fully convinced her neuro of a definite ALS diagnosis. Her progression has been extremely rapid, she's lost 20% lung capacity every 3 months since her diagnosis and is now under hospice care with, maybe, months to live.
When mom was still trying to find out what was going on with her health she saw a cardiologist who did an ultrasound on her heart and she wore a monitor for 24 hours. All of her results showed the heart of a 20 year old. Her lung tissue was totally clear and all other tests showed her to be in great health. Again, no family history of heart issues.
Last Saturday mom was rushed to the hospital with chest pain and rapid heart rate. The EMTs were sure she was having a heart attack before she was even in the ambulance. The ER process was crazy. Mom is a DNR and does not want to be intubated or have her heart shocked so the cardiologist at the hospital explained she was not really viable to go to the cath lab and get a shunt. We had to ride out a heart attack. We did and her blood results showed that this wasn't her first heart attack. She'd had a previous 'event' earlier in the week and they said that it isn't uncommon not to know it's happening. Two heart attacks?! A week later the various medications she's now on stabilized her heart rate and rhythm and we were released.
For anyone still reading, have you ever heard of anything like this? I find it hard to accept that the ALS, embolisms and heart attacks are just totally separate problems when she's been so healthy in the past and is low/no risk for the pulmonary cardiac issues. Have you ever heard of someone with ALS having these issues? none of the doctors at the hospital seemed very interested in exploring these questions. She's just a lady with ALS who had a freak attack and a freak embolism. I just feel like I'm going to lose my mom and never really be satisfied with what's happened to her.
My mom was diagnosed with probable ALS on June 30, 2011. On July 1, 2011 she was rushed to the hospital with side/chest pain and upon arrival was found to have double pulmonary embolism and clots in her leg. We have absolutely no family history of clotting disorders and she'd been working full time and still walking, driving and keeping house. She was not at risk for clots in any way and I haven't heard a lot about PALS with clotting problems.
My mother has never exhibited many typical ALS symptoms. She's never had any twitching or cramping. Her EMG results have never fully convinced her neuro of a definite ALS diagnosis. Her progression has been extremely rapid, she's lost 20% lung capacity every 3 months since her diagnosis and is now under hospice care with, maybe, months to live.
When mom was still trying to find out what was going on with her health she saw a cardiologist who did an ultrasound on her heart and she wore a monitor for 24 hours. All of her results showed the heart of a 20 year old. Her lung tissue was totally clear and all other tests showed her to be in great health. Again, no family history of heart issues.
Last Saturday mom was rushed to the hospital with chest pain and rapid heart rate. The EMTs were sure she was having a heart attack before she was even in the ambulance. The ER process was crazy. Mom is a DNR and does not want to be intubated or have her heart shocked so the cardiologist at the hospital explained she was not really viable to go to the cath lab and get a shunt. We had to ride out a heart attack. We did and her blood results showed that this wasn't her first heart attack. She'd had a previous 'event' earlier in the week and they said that it isn't uncommon not to know it's happening. Two heart attacks?! A week later the various medications she's now on stabilized her heart rate and rhythm and we were released.
For anyone still reading, have you ever heard of anything like this? I find it hard to accept that the ALS, embolisms and heart attacks are just totally separate problems when she's been so healthy in the past and is low/no risk for the pulmonary cardiac issues. Have you ever heard of someone with ALS having these issues? none of the doctors at the hospital seemed very interested in exploring these questions. She's just a lady with ALS who had a freak attack and a freak embolism. I just feel like I'm going to lose my mom and never really be satisfied with what's happened to her.