Bmgilst
Member
- Joined
- Feb 11, 2016
- Messages
- 12
- Reason
- Loved one DX
- Country
- Uni
- State
- SC
- City
- Mauldin
Are there any cases of ALS that you guys know of that have been fatal within seven months of onset of symptoms?
My mother was diagnosed with ALS formally on Monday, after initially having a diagnosis of multifocal motor neuropathy in early October. Her serious symptoms started in late August and included twitching and right sided predominant weakness. Her symptoms started not long after starting insulin injections and occurred with preceeding ( and still happening ) headaches and hearing loss.
We thought it was an autoimmune disease because she did have some response to IVIG. After her initial treatment in mid october ( 5 days of IVIG at .4g/kg per day ) she regained thumb opposition and the ability to touch her thumb and pinky on her right hand for the first time in two months. She then had a blood clot which caused her leg mobility to decline and she was put on a walker.
Here is kind of a timeline of her progression:
7/30/15 - Walked up three flights of stairs to help daughter move.
~8/15/15 noted some weakness in hand, not able to touch pinky/thumb on right hand with fasciculations starting and quickly becoming bodywide.
9/15/15 - stopped driving due to right foot weakness and started using cane.
9/28/15 - EMG
10/4/15 - MMN Diagnosis
10/17/15 - IVIG Started
11/4/15 - Blood Clot and started on walker
~11/8/15 - regained thumb opposition
11/18/15 - difficulty rising from chair
11/23/15 - IVIG infusion; rising from chair easier
11/28/15 - Fall while using cane only, ability to walk hindered.
12/7/15 - Fall and knee hurt. Started bedrest. Has not walked since without physical assist.
12/20/15 not able to easily raise right arm to shoulder levle.
12/23/15 IVIG infusion.
12/28/15 Took 38 steps with walker in PT session.
1/2/16 Right arm able to be raised above head easily
1/31/16 not able to raise arm above head.
2/1/16 - Speech difficulty ( weak voice, talking slowly )
2/3/16 - IVIG (one day)
2/7/16 - able to raise arm again.
2/9/16 - Another EMG, no upper motor neuron signs at time, second opinion of ALS.
2/16/16 - local neurologist gives order for loading dose of IVIG again due to previous response. No upper motor signs
2/18/16 - Goes on oxygen.
2/24/16 - Voice seems better, breathing without oxygen while being transferred. Able to solid food ( cube steak with little difficulty )
2/29/16 - Neurologist appointment, voice seems weaker, fatigued, reflexes seem increased compared to last time
3/2-3/4 - Daily decrease in breathing ability, can not drink water without difficulty, can't take pills without applesauce. Air hunger.
3/5 ( Today ) - Hospice nurse comes out. She is unresponsive and is expected to pass within next 24-48 hours.
We do have one other case of ALS in the family. My mom's aunt ( one of nine children ) passed from ALS in 2008 at the age of 78. My mom's generation on that side of the family consists of her and 29 first cousins ranging from age of late 40's to late 70's. She is the first from that generation to have any neurological issue. Her father passed at 76 with due to lung cancer, but he had a mild case of parkinsons that he developed around 68. Both of her fathers parents lived to 82 and 87 without any neurological problems. The neurologists / ALS specialists we've spoke with don't feel there is a strong genetic predisposition based on the pedigree.
Just wondering what you guys think. At this point it is apparent whatever she has is very, very bad but it just seems so quick based on what I've heard about ALS.
My mother was diagnosed with ALS formally on Monday, after initially having a diagnosis of multifocal motor neuropathy in early October. Her serious symptoms started in late August and included twitching and right sided predominant weakness. Her symptoms started not long after starting insulin injections and occurred with preceeding ( and still happening ) headaches and hearing loss.
We thought it was an autoimmune disease because she did have some response to IVIG. After her initial treatment in mid october ( 5 days of IVIG at .4g/kg per day ) she regained thumb opposition and the ability to touch her thumb and pinky on her right hand for the first time in two months. She then had a blood clot which caused her leg mobility to decline and she was put on a walker.
Here is kind of a timeline of her progression:
7/30/15 - Walked up three flights of stairs to help daughter move.
~8/15/15 noted some weakness in hand, not able to touch pinky/thumb on right hand with fasciculations starting and quickly becoming bodywide.
9/15/15 - stopped driving due to right foot weakness and started using cane.
9/28/15 - EMG
10/4/15 - MMN Diagnosis
10/17/15 - IVIG Started
11/4/15 - Blood Clot and started on walker
~11/8/15 - regained thumb opposition
11/18/15 - difficulty rising from chair
11/23/15 - IVIG infusion; rising from chair easier
11/28/15 - Fall while using cane only, ability to walk hindered.
12/7/15 - Fall and knee hurt. Started bedrest. Has not walked since without physical assist.
12/20/15 not able to easily raise right arm to shoulder levle.
12/23/15 IVIG infusion.
12/28/15 Took 38 steps with walker in PT session.
1/2/16 Right arm able to be raised above head easily
1/31/16 not able to raise arm above head.
2/1/16 - Speech difficulty ( weak voice, talking slowly )
2/3/16 - IVIG (one day)
2/7/16 - able to raise arm again.
2/9/16 - Another EMG, no upper motor neuron signs at time, second opinion of ALS.
2/16/16 - local neurologist gives order for loading dose of IVIG again due to previous response. No upper motor signs
2/18/16 - Goes on oxygen.
2/24/16 - Voice seems better, breathing without oxygen while being transferred. Able to solid food ( cube steak with little difficulty )
2/29/16 - Neurologist appointment, voice seems weaker, fatigued, reflexes seem increased compared to last time
3/2-3/4 - Daily decrease in breathing ability, can not drink water without difficulty, can't take pills without applesauce. Air hunger.
3/5 ( Today ) - Hospice nurse comes out. She is unresponsive and is expected to pass within next 24-48 hours.
We do have one other case of ALS in the family. My mom's aunt ( one of nine children ) passed from ALS in 2008 at the age of 78. My mom's generation on that side of the family consists of her and 29 first cousins ranging from age of late 40's to late 70's. She is the first from that generation to have any neurological issue. Her father passed at 76 with due to lung cancer, but he had a mild case of parkinsons that he developed around 68. Both of her fathers parents lived to 82 and 87 without any neurological problems. The neurologists / ALS specialists we've spoke with don't feel there is a strong genetic predisposition based on the pedigree.
Just wondering what you guys think. At this point it is apparent whatever she has is very, very bad but it just seems so quick based on what I've heard about ALS.