jnikes
New member
- Joined
- Sep 5, 2017
- Messages
- 8
- Reason
- Lost a loved one
- Country
- US
- State
- NY
- City
- New York
Hi all,
Thank you in advance for taking the time to read this. I am going to do my best to keep this succinct. Any help and feedback is tremendously appreciated.
Here is what's going on:
In 2011 I lost my mother to ALS. In 2009 my grandmother passed away from MS.
I am 26 years old, and living in NYC. About July 1, 2017 I was on vacation with a few friends when I noticed a sluggishness in my left hand. I thought very little of it as it was not very bothersome when it first occurred. About a week later I was back home in NY and noticed the same sort of feeling in my right hand. Then the concern set in.. I had lived for the last 6 years without my mother having no concern about FALS. She was tested in 2011 and did not carry the genetic form of the disease.
So now I'm freaking out. I realize I had been living my life on autopilot for the last year. Working at a job that was intensely stressful, surviving on coffee and fumes, and partying with my friends on the weekends. The weeks pass in July and the symptoms worsen. I feel my hands gradually slowing down more. I have a certain clumsiness when I walk that I have never felt before. A level of fatigue that is like nothing I have experienced before either. If I go for a long walk I get back home and my legs feel like they are burning on the inside... I feel like I am existed in a consistent state of brain fog. My body just generally is not moving as quickly and swiftly as it once did and I tire much faster than I used to. Also, muscle twitches all over my body. Never seem to be isolated, just a random twitch here and there for no apparent reason from my neck down to my toes.
So I have a visit with one neurologist. After a few appointments, checking for carpal tunnel, MRI on my brain, and a number of blood tests, all come back normal. This neuro was young and wasn't taking the fact that my mother had ALS very seriously. She was basing this all on the fact that the chances of a 26 year old being diagnoses are so slim and seemed to believe this is psychosomatic.
About three weeks ago I go to another neuro. He does the nerve conduction study and EMG. EMG comes back clean and he says no ALS. Nerve study comes back with two results for my right hand on the very low end of average. Neuro Diagnoses me with "hand weakness". Tells me to take Vitamin E, to exercise, and not to smoke (I'm not a smoker but have occasionally smoked cigarettes here and there). He ends the appointment by saying "they found a new familial gene in 2013 so we can't rule out the familial link. If you have concerns about this in the future you can come back." No offer of any other specialist to see, no other explanations for what I'm experiencing. As my hands continue to decline in dexterity I don't know what else to do... Looking for answers but can;t even get in to see another neuro for 2-3 months. Literally they are all booked.
I am looking for answers and not sure where to go from here? Are there any other clinical or diagnostic explanations for whats going on? If so, what type of specialist should I see? Thank you for reading and I look forward to your replies.
Yours,
Jeff
Thank you in advance for taking the time to read this. I am going to do my best to keep this succinct. Any help and feedback is tremendously appreciated.
Here is what's going on:
In 2011 I lost my mother to ALS. In 2009 my grandmother passed away from MS.
I am 26 years old, and living in NYC. About July 1, 2017 I was on vacation with a few friends when I noticed a sluggishness in my left hand. I thought very little of it as it was not very bothersome when it first occurred. About a week later I was back home in NY and noticed the same sort of feeling in my right hand. Then the concern set in.. I had lived for the last 6 years without my mother having no concern about FALS. She was tested in 2011 and did not carry the genetic form of the disease.
So now I'm freaking out. I realize I had been living my life on autopilot for the last year. Working at a job that was intensely stressful, surviving on coffee and fumes, and partying with my friends on the weekends. The weeks pass in July and the symptoms worsen. I feel my hands gradually slowing down more. I have a certain clumsiness when I walk that I have never felt before. A level of fatigue that is like nothing I have experienced before either. If I go for a long walk I get back home and my legs feel like they are burning on the inside... I feel like I am existed in a consistent state of brain fog. My body just generally is not moving as quickly and swiftly as it once did and I tire much faster than I used to. Also, muscle twitches all over my body. Never seem to be isolated, just a random twitch here and there for no apparent reason from my neck down to my toes.
So I have a visit with one neurologist. After a few appointments, checking for carpal tunnel, MRI on my brain, and a number of blood tests, all come back normal. This neuro was young and wasn't taking the fact that my mother had ALS very seriously. She was basing this all on the fact that the chances of a 26 year old being diagnoses are so slim and seemed to believe this is psychosomatic.
About three weeks ago I go to another neuro. He does the nerve conduction study and EMG. EMG comes back clean and he says no ALS. Nerve study comes back with two results for my right hand on the very low end of average. Neuro Diagnoses me with "hand weakness". Tells me to take Vitamin E, to exercise, and not to smoke (I'm not a smoker but have occasionally smoked cigarettes here and there). He ends the appointment by saying "they found a new familial gene in 2013 so we can't rule out the familial link. If you have concerns about this in the future you can come back." No offer of any other specialist to see, no other explanations for what I'm experiencing. As my hands continue to decline in dexterity I don't know what else to do... Looking for answers but can;t even get in to see another neuro for 2-3 months. Literally they are all booked.
I am looking for answers and not sure where to go from here? Are there any other clinical or diagnostic explanations for whats going on? If so, what type of specialist should I see? Thank you for reading and I look forward to your replies.
Yours,
Jeff