Rounder78
Member
- Joined
- May 30, 2015
- Messages
- 20
- Reason
- Lost a loved one
- Country
- US
- State
- NV
- City
- Reno
Good Morning
I had two previous threads on the forum which have closed, 1 regarding my Mom and dealing with her ALS diagnosis and 1 regarding the symptoms I was experiencing after meeting Dr. Google and living with a loved one with ALS. A lot has happened since my last post and I wish I wasn't here, but I am.
Since learning about my Mom's diagnosis with ALS in May 2015, life has been hell. My previous posts spoke about dealing with the reality of the diagnosis and living in fear for my Mom and myself some 14 hours away. I just turned 38 last month and have a wonderful wife and 3 year old daughter.
My Mom's journey ended in August of this year. She fought so hard, wanting to hold on to her life, husband, children and grandchildren. My Dad, he retired, they built a house that would keep her safe on the land she grew up on and she fortunately now is in a better place. I can't say enough about my Dad and how he handled the situation until the very end. I did what I thought was right and got up to see her every 6-8 weeks or so. Towards the end, she was reluctant to see people and I had peace knowing she knew how I felt about her.
As I wrote before, I became obsessed with researching the disease and started twitching within weeks of her diagnosis. I went to my PCP about things, many times. Much like others have stated on here, there wasn't much discussion and he sort of dismissed it to anxiety. I would love for it to be anxiety. Obviously the stress of the events with my Mom and other life events (new house, new job, raising a 3 year old) has kept me on edge.
I did really well to stay off this forum and researching for a good 7-9 months, until I started questioning what was physically happening to me (or what I was manifesting). Long story short, 18 months later after my first twitch, I still have not tripped or fallen. I can do all the fun strength tests (tippy toe, toe to heel walk, calf raises, walk on heels, etc). I would say that I experience a wide range of symptoms, depending on the day. I do have a RX for my anxiety and that seems to help. My right leg at times will burn, tingle, vibrate or have an overall dull/numb feeling. It is harder to curl my toes up. I feel like my gait has changed (like I work to pick up the foot) but of course that's all I think about and I've never tripped or anything. I've even taped myself walking and it appears fine.
Over this period of time, there has been some atrophy develop in the affected leg. Measurements are off a bit (in middle of thigh and just above ankle/calf area - right side smaller) and you can feel the muscle mass difference in the quad/thigh area. This is only on my right side. The thigh/quad I've been monitoring for almost a year. The ankle atrophy is more the last 1-2 months. I find it strange to have atrophy start in the thigh/quad area and then skip the calf down into the ankle/foot area. I'm not sure when they popped up but the inside of my knees have sunken in when squatting (both knees identical). The inside of my right foot/ankle has thinned out. All these physical/visible issues while feeling everything. To be honest I've dismissed twitching, as they can instantly pop up in a stressful meeting and jump around (always primary to right calf though). I've read a lot about perceived vs clinical weakness, I have some pain when I walk but I've yet to be truly limited in daily activity. All this, progressing over the past 18 months.
So I am here, scared and afraid that maybe this actually is ALS. I shouldn't say scared/afraid, but terrified that yes, 18 months has passed and I'm still here, but things I can't dismiss have developed (atrophy). I feel like I am a bit more educated than most posting questions in here, having lived thru seeing the disease running its course. That doesn't make me better or their fears any different, but having first hand experience makes it real. I've really held onto the fact that I've always "felt" things. I feel the thumping twitches, I feel the fine vibrating ones. I feel the pain/tingling into my toes. Some days, my leg burns so bad I want to cut it off. Feeling = no ALS. But why the atrophy, why the weakness? Is this just the slow onset/progression of the disease?
So I go to the argument of atrophy without true weakness or would a neuro say I do have clinical weakness? I have tried to take the recommendations of those who replied (notably Mike) in seeing two different doctors to address my concerns. Lots of time talking about things and such. Twitching, yes. Atrophy, yes. Some form of weakness, yes. I've hit most of the stickies.
So give it to me straight, thoughts? A lot of you say don't chase a diagnosis, what good would it do you? Don't go until something "fails". I've taken that advice, but I love my family and would love to have another child. My Mom is the only person we know of in our family, so it can't be FALS, right? There isn't a single test to say yes or no, but the thought of my daughter potentially inheriting? Heart breaking. I'm terrified to have another child who could inherit.
Life needs to continue and it starts with me. This has affected all aspects of my life and I need to fix it. I know something is wrong with my body and I have to man up to find out. I have to be responsible for my family. I'm here for thoughts, guidance and insight. I know many of you have dismissed my concerns from 15-18 months ago. Things have changed a bit and I appreciate a 2nd look. I know there have been many like me, back after a year or more. Being that my Mom had the disease, it's a little bit scary being back here because that means things haven't improved for me.
It's nearly impossible to get straight pictures that don't distort things, but I've attached a couple to look at. Note there is small measurement differences which have developed over this time.
I had two previous threads on the forum which have closed, 1 regarding my Mom and dealing with her ALS diagnosis and 1 regarding the symptoms I was experiencing after meeting Dr. Google and living with a loved one with ALS. A lot has happened since my last post and I wish I wasn't here, but I am.
Since learning about my Mom's diagnosis with ALS in May 2015, life has been hell. My previous posts spoke about dealing with the reality of the diagnosis and living in fear for my Mom and myself some 14 hours away. I just turned 38 last month and have a wonderful wife and 3 year old daughter.
My Mom's journey ended in August of this year. She fought so hard, wanting to hold on to her life, husband, children and grandchildren. My Dad, he retired, they built a house that would keep her safe on the land she grew up on and she fortunately now is in a better place. I can't say enough about my Dad and how he handled the situation until the very end. I did what I thought was right and got up to see her every 6-8 weeks or so. Towards the end, she was reluctant to see people and I had peace knowing she knew how I felt about her.
As I wrote before, I became obsessed with researching the disease and started twitching within weeks of her diagnosis. I went to my PCP about things, many times. Much like others have stated on here, there wasn't much discussion and he sort of dismissed it to anxiety. I would love for it to be anxiety. Obviously the stress of the events with my Mom and other life events (new house, new job, raising a 3 year old) has kept me on edge.
I did really well to stay off this forum and researching for a good 7-9 months, until I started questioning what was physically happening to me (or what I was manifesting). Long story short, 18 months later after my first twitch, I still have not tripped or fallen. I can do all the fun strength tests (tippy toe, toe to heel walk, calf raises, walk on heels, etc). I would say that I experience a wide range of symptoms, depending on the day. I do have a RX for my anxiety and that seems to help. My right leg at times will burn, tingle, vibrate or have an overall dull/numb feeling. It is harder to curl my toes up. I feel like my gait has changed (like I work to pick up the foot) but of course that's all I think about and I've never tripped or anything. I've even taped myself walking and it appears fine.
Over this period of time, there has been some atrophy develop in the affected leg. Measurements are off a bit (in middle of thigh and just above ankle/calf area - right side smaller) and you can feel the muscle mass difference in the quad/thigh area. This is only on my right side. The thigh/quad I've been monitoring for almost a year. The ankle atrophy is more the last 1-2 months. I find it strange to have atrophy start in the thigh/quad area and then skip the calf down into the ankle/foot area. I'm not sure when they popped up but the inside of my knees have sunken in when squatting (both knees identical). The inside of my right foot/ankle has thinned out. All these physical/visible issues while feeling everything. To be honest I've dismissed twitching, as they can instantly pop up in a stressful meeting and jump around (always primary to right calf though). I've read a lot about perceived vs clinical weakness, I have some pain when I walk but I've yet to be truly limited in daily activity. All this, progressing over the past 18 months.
So I am here, scared and afraid that maybe this actually is ALS. I shouldn't say scared/afraid, but terrified that yes, 18 months has passed and I'm still here, but things I can't dismiss have developed (atrophy). I feel like I am a bit more educated than most posting questions in here, having lived thru seeing the disease running its course. That doesn't make me better or their fears any different, but having first hand experience makes it real. I've really held onto the fact that I've always "felt" things. I feel the thumping twitches, I feel the fine vibrating ones. I feel the pain/tingling into my toes. Some days, my leg burns so bad I want to cut it off. Feeling = no ALS. But why the atrophy, why the weakness? Is this just the slow onset/progression of the disease?
So I go to the argument of atrophy without true weakness or would a neuro say I do have clinical weakness? I have tried to take the recommendations of those who replied (notably Mike) in seeing two different doctors to address my concerns. Lots of time talking about things and such. Twitching, yes. Atrophy, yes. Some form of weakness, yes. I've hit most of the stickies.
So give it to me straight, thoughts? A lot of you say don't chase a diagnosis, what good would it do you? Don't go until something "fails". I've taken that advice, but I love my family and would love to have another child. My Mom is the only person we know of in our family, so it can't be FALS, right? There isn't a single test to say yes or no, but the thought of my daughter potentially inheriting? Heart breaking. I'm terrified to have another child who could inherit.
Life needs to continue and it starts with me. This has affected all aspects of my life and I need to fix it. I know something is wrong with my body and I have to man up to find out. I have to be responsible for my family. I'm here for thoughts, guidance and insight. I know many of you have dismissed my concerns from 15-18 months ago. Things have changed a bit and I appreciate a 2nd look. I know there have been many like me, back after a year or more. Being that my Mom had the disease, it's a little bit scary being back here because that means things haven't improved for me.
It's nearly impossible to get straight pictures that don't distort things, but I've attached a couple to look at. Note there is small measurement differences which have developed over this time.