sparrowking
New member
- Joined
- Apr 26, 2021
- Messages
- 4
- Reason
- Loved one DX
- Diagnosis
- 00/0000
- Country
- IN
Hi everyone,
We have a rather peculiar case with ALS or of type. My father started showing ALS symptoms about 5.5 years ago with foot drop and weakness of left great toe. His symptoms were consistent with ALS but some doctors were hesitant to diagnose him with ALS for whatever reason I don't understand (3 years ago, it was written as "demyelinating disorder or mitochondrial disorder" in his diagnosis and treated with cyclophosphamide for which my father's body responded initially and then it didn't after that). Other doctor's diagnosed him directly with MND after some few tests.
It all started with left leg and then right leg and then gradually progressed to hands and now he has difficulty swallowing and speaking. We will see a neurologist in next few weeks who said in our last appointment that he'll say whether it is a type of ALS or not. My father has 5 siblings of which youngest sibling died long back of something that seems ALS (don't know details exactly, it was very long back, she was in her 20's, became serious after her delivery and then died around 9 months later, if I'm not wrong). Another sibling, a male this time, died at around 52 with something close to ALS (some muscle disorder or paralysis, details are not clear). My grandfather and grandmother, on the other hand, lived a relatively long life, died in their mid 70's or close to 80's. However, I am sure they didn't die of ALS or such related disease since they were healthy, walking & talking and they died of some heart trouble or something, all of sudden (in a night). But my grandfather and grandmother were very closely related (Consanguine marriage - happens often in India). After my father's condition and with one reputed doctor diagnosing him with MND, my and my sister started worrying about whether we'll inherit the mutation.
My query being, whether it is possible for ALS to skip generation, as it didn't come to our grandparents, but three of their children (of 5) got it? Although, we are not sure of the diagnosis of those passed away (but were told of involvement with nerves). Also, is it possible that the conditions of my father and his two siblings is because of "Consanguine marriage", just want to know if there are any such conditions that mimic ALS very closely?
Each and every twitch in my leg started to worry me and I started to check on my left toe (that's how it started for my father) and has been checking on it constantly for past 8 months (from when I had knee problem). I started my PhD in January and it has been very stressful and am finding it very hard to concentrate with what's going with my father and twitches in my left leg (in calf, in thigh, above and around knee, foot, sometimes vibrating sensation in foot and toes; only sometimes not continuously). I had problem with my left Knee, as MRI showed some sort of mild degenerative meniscus tear, but moved to another country from then and couldn't get the treatment for that yet.
Any reply would be of great help and will be obliged.
Thank you for your time.
We have a rather peculiar case with ALS or of type. My father started showing ALS symptoms about 5.5 years ago with foot drop and weakness of left great toe. His symptoms were consistent with ALS but some doctors were hesitant to diagnose him with ALS for whatever reason I don't understand (3 years ago, it was written as "demyelinating disorder or mitochondrial disorder" in his diagnosis and treated with cyclophosphamide for which my father's body responded initially and then it didn't after that). Other doctor's diagnosed him directly with MND after some few tests.
It all started with left leg and then right leg and then gradually progressed to hands and now he has difficulty swallowing and speaking. We will see a neurologist in next few weeks who said in our last appointment that he'll say whether it is a type of ALS or not. My father has 5 siblings of which youngest sibling died long back of something that seems ALS (don't know details exactly, it was very long back, she was in her 20's, became serious after her delivery and then died around 9 months later, if I'm not wrong). Another sibling, a male this time, died at around 52 with something close to ALS (some muscle disorder or paralysis, details are not clear). My grandfather and grandmother, on the other hand, lived a relatively long life, died in their mid 70's or close to 80's. However, I am sure they didn't die of ALS or such related disease since they were healthy, walking & talking and they died of some heart trouble or something, all of sudden (in a night). But my grandfather and grandmother were very closely related (Consanguine marriage - happens often in India). After my father's condition and with one reputed doctor diagnosing him with MND, my and my sister started worrying about whether we'll inherit the mutation.
My query being, whether it is possible for ALS to skip generation, as it didn't come to our grandparents, but three of their children (of 5) got it? Although, we are not sure of the diagnosis of those passed away (but were told of involvement with nerves). Also, is it possible that the conditions of my father and his two siblings is because of "Consanguine marriage", just want to know if there are any such conditions that mimic ALS very closely?
Each and every twitch in my leg started to worry me and I started to check on my left toe (that's how it started for my father) and has been checking on it constantly for past 8 months (from when I had knee problem). I started my PhD in January and it has been very stressful and am finding it very hard to concentrate with what's going with my father and twitches in my left leg (in calf, in thigh, above and around knee, foot, sometimes vibrating sensation in foot and toes; only sometimes not continuously). I had problem with my left Knee, as MRI showed some sort of mild degenerative meniscus tear, but moved to another country from then and couldn't get the treatment for that yet.
Any reply would be of great help and will be obliged.
Thank you for your time.