Hi everyone here is a little backstory and although I might just be digging for a glimmer of hope since we just got the diagnosis, please be honest and give it to me real as I cannot imagine my life without my mother, we are very close and I would like for her to at least hold her grand children.
My mom whos 62 y/o and previously mostly healthy about a year ago started losing control of her foot (drop foot) this kinda persisted and nobody thought too much of it as the initial diagnosis was that during covid she lost a lot of weight due to stress and having to wear a crap ton of PPE at work so it's possible that her peroneal nerve near her knee was pinched.
We just kind of assumed it was this for about half a year, going to acupuncture/Physical therapy and seeing a neurologist who agreed with the original diagnosis.
We recently, however, decided to get a second opinion from a neurologist in Mount Sinai NYC who supposed to be a ALS specialist saw her for about an hour did the EMG needle test and diagnosed her with ALS. My world turned upside down and for the whole day I almost couldn't accept it. I asked the doctor if ALS usually progresses this fast as less than a year ago she just had slight ankle numbness and now she has the foot drop and he said her case would be considered slow as it's been almost a year.
My mom actually doesn't really feel this anywhere else on her body except her right leg below the knee, her other leg is slightly affected these days because she's leaning on it a lot, could be the ALS but I'm not sure.
After getting home I've been frantically researching and it seems that MMN could sometimes be misdiagnosed as ALS. The doctor at the ALS center didn't take any blood work, didn't look at her medical history. My mom has always had back issues her whole life, a genetic deformity of her low spinal columns that sometimes could pinch the nerve etc. is there is even a %1 chance that an ALS specialist tends to find what they look for since they work with ALS so much I would like some answers to what further steps I can take to confirm this diagnosis, should I have her take a genetic test or blood work to double-check if it can be MMN.
I understand that the information out there although list many things its often generalized and don't want to be liable so I've come here to those who had personal experience for your take and experience, for those who are willing to share your stories and experiences I'm grateful from the bottom of my heart.
My mom whos 62 y/o and previously mostly healthy about a year ago started losing control of her foot (drop foot) this kinda persisted and nobody thought too much of it as the initial diagnosis was that during covid she lost a lot of weight due to stress and having to wear a crap ton of PPE at work so it's possible that her peroneal nerve near her knee was pinched.
We just kind of assumed it was this for about half a year, going to acupuncture/Physical therapy and seeing a neurologist who agreed with the original diagnosis.
We recently, however, decided to get a second opinion from a neurologist in Mount Sinai NYC who supposed to be a ALS specialist saw her for about an hour did the EMG needle test and diagnosed her with ALS. My world turned upside down and for the whole day I almost couldn't accept it. I asked the doctor if ALS usually progresses this fast as less than a year ago she just had slight ankle numbness and now she has the foot drop and he said her case would be considered slow as it's been almost a year.
My mom actually doesn't really feel this anywhere else on her body except her right leg below the knee, her other leg is slightly affected these days because she's leaning on it a lot, could be the ALS but I'm not sure.
After getting home I've been frantically researching and it seems that MMN could sometimes be misdiagnosed as ALS. The doctor at the ALS center didn't take any blood work, didn't look at her medical history. My mom has always had back issues her whole life, a genetic deformity of her low spinal columns that sometimes could pinch the nerve etc. is there is even a %1 chance that an ALS specialist tends to find what they look for since they work with ALS so much I would like some answers to what further steps I can take to confirm this diagnosis, should I have her take a genetic test or blood work to double-check if it can be MMN.
I understand that the information out there although list many things its often generalized and don't want to be liable so I've come here to those who had personal experience for your take and experience, for those who are willing to share your stories and experiences I'm grateful from the bottom of my heart.
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