Dan8490
New member
- Joined
- Apr 24, 2015
- Messages
- 2
- Reason
- Learn about ALS
- Country
- FL
- State
- florida
- City
- orlando
So this may be a bit long, I apologize. My mom is currently in a hospital on a ventilator right now and we've yet to really yet to get a diagnosis. She's been through multiple doctors over the last few years, some have said ALS or MS and some have ruled it out. So I'm hoping to get some answers or at least some advice here.
About 10 years ago, my mom tripped and fractured her left shoulder. She went to the hospital and they put it in a sling and sent her home. She had some therapy for a few months and everything seemed to be fine. Well a little while after her therapy ended, she started having some weakness in the left arm, it started in the fingers. My mom worked most of her life in an office, so it was assumed to be carpal tunnel and they did surgery to fix it. The weakness progressed to her wrist and forearm, so they also did surgery on the elbow. The same thing also began to happen with her right arm although not as severe. Eventually the weakness affected both arms from the upper arm down. At this point the doctor speculated it could be her rotator cuff and wanted to do surgery on that. My mom had enough of the it could be surgeries and went to another doctor who recommended a neurologist. My mom went to this neurologist, he did tests and said he didn't see anything and to go this research hospital in Gainesville. Well she did and they did a battery of tests and concluded it was not cancer, ALS, or MS, but there is 1001 other things it could be. They gave my mom a medication for muscle inflammation and that was it. At this point my mom pretty much gave up, she couldn't afford this medication (nearly $1000 per refill) or to go to this hospital. By 2008, her arms were really weak and had little use of them. She could move her shoulders and two fingers but that was it.
For four years my mom made it work, she just decided to live with it and the weakness pretty much stayed the same. Nothing else was ever affected just her two arms. In 2012, she slipped and fell again, this time she fractures her right hip. The way she fell sent her back/neck slamming against the wall. I mention this cause after this fall she mentions that she feels sensation in her fingers and hands again something that she hadn't felt in a while. Well she goes to the hospital and they repair her hip. When my mom mentions the sensation to her doctor, he says its a good sign cause it's probably not a muscle or nerve disease because she's regained sensation and because of the onset of her symptoms in the beginning. He gives an MRI of the neck which shows compression in the C4,C5,and C6 disks. They rule that as the cause of my mom's condition and refer her to a spinal surgeon. My mom sees the spinal surgeon and he relieves the compression and he informs us that its unclear how much strength my mom would get back,if any, but that this would at least stop it from getting worse. Now before the neck surgery, a few weeks after the hip surgery, the hospital had my mom walking around with assistance of course. They also had her walking after the spinal surgery. The doctor ordered her to receive intensive therapy on her arms and legs at a facility followed by continued therapy at home. At the facility, they refused to do therapy. Their claim was their therapist's assessment is it's unwarranted as she is a quadriplegic with a muscular disorder. Her insurance wouldn't allow her to be transferred so were stuck with arguing with a therapist who wouldn't listen. My mom remained bed ridden for six months, in that time she developed a drop foot in the right foot. She was discharged home and finally able to get the therapy that the doctor prescribed.
She was getting therapy for a few months and they were concerned about her drop foot but noted that it was getting better. Worse case scenario she would need a brace. Her other leg was fine. Things started to get bad when the OT therapist refused to do therapy on her arms cause she was more interested in waiting to see if my mom would need a wheelchair and what it would look like. This OT therapist also worked at the facility my mom was in. The leg therapy was going well until the doctor's prescription ran out and we had to get a new one. Unfortunately, we had to get it from my mom's primary this time. This doctor is the only doctor in town who makes house calls. This doctor doesn't even bother coming to the house and instead writes that my mom is quadriplegic and refuses to write a script for therapy or an assessment. At one point writing that my mom was an amputee. He was forcibly retired when they discovered he was suffering from dementia for a while. So after a few months of little to no therapy, my mom gets a new doctor who right away writes a prescription and my mom is getting therapy again. She was making some real good improvements, the drop foot wasn't as bad, and she was able to move her fingers in like a waving motion.
At the end of last year, she had to go back to the hospital yet again. This time for surgery on her stomach. While there she also had an esophageal stent put in, as she was having trouble with food getting stuck sometimes, apparently this can happen as you get older. After the stomach surgery, my mom was instructed to get breathing treatments in the ICU every two hours with a spirometer. The ICU did not do any of these treatments and my mom couldn't do them herself. These treatments are to prevent patients from getting pneumonia after surgery. The hospital discharged my mom to an acute care facility until she could be taken home. She was there for a day and then she was having some trouble breathing and was feeling sick. They sent her back to the hospital. The hospital thought it was pneumonia or bronchitis and did a bronchoscopy, my mom had an allergic reaction to the lidocaine they used and coded. She was resuscitated and intubated and has been a ventilator since. Since this point there has been numerous diagnosis. Her first pulmonologist said her diaphragm is paralyzed from her muscle disorder, she's a quadriplegic. When I informed him of the above story, he changed it to COPD. Either way he suggested taking her off the vent and putting her in hospice. The second pulmonologist said her diaphragm was not paralyzed but her lungs were damaged from the lidocaine and it will take time to recover, something that has been said by other doctors as well. She spent three months in this hospital before being transferred to an LTAC facility. There she managed to be off a vent for 16 hours and they were waiting to start nighttime weening. Unfortunately her insurance ran out and she had to be sent to another facility which is less intensive. The first hospital was a nightmare, they tried to ween her off twice, unsuccessfully by just turning the vent off. They put in a wrong size trach which dislodged and ended up causing her to code again. They also refuse to accept the diagnosis of a lidocaine reaction as being the cause of her needing the vent, instead they insist it's because she's quadriplegic and has a muscle disorder. So now because of this, it's in her records, and every new facility she goes to I have to tell the whole story. This also causes a lot of confusion since the first prognosis from each place begins with "well because she has ALS and is quadriplegic." after I tell them what happened, then there is no prognosis.
I know this was really long and thank you to anyone who reads it all. I just don't know what to think anymore. I've heard it is ALS or MS and I've heard its not. Ruling it out as being that seems to disappoint the doctors cause then there is no answer or explanation. However, the assumption and sometimes insistence of thats being it changes their attitude on the treatment. Those who are convinced that it's ALS or something, have an attitude of there is nothing we can do and we're not even going to try. I guess my question is to those who have experienced ALS or have been around something with it, does this sound like ALS? To me, it seems all unrelated and essentially is just my mom having really bad luck over the last ten years but at this point I don't know.
Any advice or thoughts are really appreciated. Thanks again to anyone who takes the time to read this.
About 10 years ago, my mom tripped and fractured her left shoulder. She went to the hospital and they put it in a sling and sent her home. She had some therapy for a few months and everything seemed to be fine. Well a little while after her therapy ended, she started having some weakness in the left arm, it started in the fingers. My mom worked most of her life in an office, so it was assumed to be carpal tunnel and they did surgery to fix it. The weakness progressed to her wrist and forearm, so they also did surgery on the elbow. The same thing also began to happen with her right arm although not as severe. Eventually the weakness affected both arms from the upper arm down. At this point the doctor speculated it could be her rotator cuff and wanted to do surgery on that. My mom had enough of the it could be surgeries and went to another doctor who recommended a neurologist. My mom went to this neurologist, he did tests and said he didn't see anything and to go this research hospital in Gainesville. Well she did and they did a battery of tests and concluded it was not cancer, ALS, or MS, but there is 1001 other things it could be. They gave my mom a medication for muscle inflammation and that was it. At this point my mom pretty much gave up, she couldn't afford this medication (nearly $1000 per refill) or to go to this hospital. By 2008, her arms were really weak and had little use of them. She could move her shoulders and two fingers but that was it.
For four years my mom made it work, she just decided to live with it and the weakness pretty much stayed the same. Nothing else was ever affected just her two arms. In 2012, she slipped and fell again, this time she fractures her right hip. The way she fell sent her back/neck slamming against the wall. I mention this cause after this fall she mentions that she feels sensation in her fingers and hands again something that she hadn't felt in a while. Well she goes to the hospital and they repair her hip. When my mom mentions the sensation to her doctor, he says its a good sign cause it's probably not a muscle or nerve disease because she's regained sensation and because of the onset of her symptoms in the beginning. He gives an MRI of the neck which shows compression in the C4,C5,and C6 disks. They rule that as the cause of my mom's condition and refer her to a spinal surgeon. My mom sees the spinal surgeon and he relieves the compression and he informs us that its unclear how much strength my mom would get back,if any, but that this would at least stop it from getting worse. Now before the neck surgery, a few weeks after the hip surgery, the hospital had my mom walking around with assistance of course. They also had her walking after the spinal surgery. The doctor ordered her to receive intensive therapy on her arms and legs at a facility followed by continued therapy at home. At the facility, they refused to do therapy. Their claim was their therapist's assessment is it's unwarranted as she is a quadriplegic with a muscular disorder. Her insurance wouldn't allow her to be transferred so were stuck with arguing with a therapist who wouldn't listen. My mom remained bed ridden for six months, in that time she developed a drop foot in the right foot. She was discharged home and finally able to get the therapy that the doctor prescribed.
She was getting therapy for a few months and they were concerned about her drop foot but noted that it was getting better. Worse case scenario she would need a brace. Her other leg was fine. Things started to get bad when the OT therapist refused to do therapy on her arms cause she was more interested in waiting to see if my mom would need a wheelchair and what it would look like. This OT therapist also worked at the facility my mom was in. The leg therapy was going well until the doctor's prescription ran out and we had to get a new one. Unfortunately, we had to get it from my mom's primary this time. This doctor is the only doctor in town who makes house calls. This doctor doesn't even bother coming to the house and instead writes that my mom is quadriplegic and refuses to write a script for therapy or an assessment. At one point writing that my mom was an amputee. He was forcibly retired when they discovered he was suffering from dementia for a while. So after a few months of little to no therapy, my mom gets a new doctor who right away writes a prescription and my mom is getting therapy again. She was making some real good improvements, the drop foot wasn't as bad, and she was able to move her fingers in like a waving motion.
At the end of last year, she had to go back to the hospital yet again. This time for surgery on her stomach. While there she also had an esophageal stent put in, as she was having trouble with food getting stuck sometimes, apparently this can happen as you get older. After the stomach surgery, my mom was instructed to get breathing treatments in the ICU every two hours with a spirometer. The ICU did not do any of these treatments and my mom couldn't do them herself. These treatments are to prevent patients from getting pneumonia after surgery. The hospital discharged my mom to an acute care facility until she could be taken home. She was there for a day and then she was having some trouble breathing and was feeling sick. They sent her back to the hospital. The hospital thought it was pneumonia or bronchitis and did a bronchoscopy, my mom had an allergic reaction to the lidocaine they used and coded. She was resuscitated and intubated and has been a ventilator since. Since this point there has been numerous diagnosis. Her first pulmonologist said her diaphragm is paralyzed from her muscle disorder, she's a quadriplegic. When I informed him of the above story, he changed it to COPD. Either way he suggested taking her off the vent and putting her in hospice. The second pulmonologist said her diaphragm was not paralyzed but her lungs were damaged from the lidocaine and it will take time to recover, something that has been said by other doctors as well. She spent three months in this hospital before being transferred to an LTAC facility. There she managed to be off a vent for 16 hours and they were waiting to start nighttime weening. Unfortunately her insurance ran out and she had to be sent to another facility which is less intensive. The first hospital was a nightmare, they tried to ween her off twice, unsuccessfully by just turning the vent off. They put in a wrong size trach which dislodged and ended up causing her to code again. They also refuse to accept the diagnosis of a lidocaine reaction as being the cause of her needing the vent, instead they insist it's because she's quadriplegic and has a muscle disorder. So now because of this, it's in her records, and every new facility she goes to I have to tell the whole story. This also causes a lot of confusion since the first prognosis from each place begins with "well because she has ALS and is quadriplegic." after I tell them what happened, then there is no prognosis.
I know this was really long and thank you to anyone who reads it all. I just don't know what to think anymore. I've heard it is ALS or MS and I've heard its not. Ruling it out as being that seems to disappoint the doctors cause then there is no answer or explanation. However, the assumption and sometimes insistence of thats being it changes their attitude on the treatment. Those who are convinced that it's ALS or something, have an attitude of there is nothing we can do and we're not even going to try. I guess my question is to those who have experienced ALS or have been around something with it, does this sound like ALS? To me, it seems all unrelated and essentially is just my mom having really bad luck over the last ten years but at this point I don't know.
Any advice or thoughts are really appreciated. Thanks again to anyone who takes the time to read this.