April2015
New member
- Joined
- Feb 13, 2015
- Messages
- 5
- Reason
- Lost a loved one
- Country
- US
- State
- Fl
- City
- Crazy land
First off let me say this may sound crazy to you but I wanted to try to get the opinions of people who had first-hand experience with this…
I am 33 my symptoms began back in September with alternating tingling and heavy feeling s in my arms. One day it would be my left bothering me then a few days later it wound be my right. This was followed up with mild body wide twitching and constant twitching in legs. My first concern was ALS. My grandmother was diagnosed with bulbar in 2012 and passed in April of 2013. I didn’t really know much about the disease until recently when I started reading about it on Dr. Google. (I know not the best thing to do) My grandmother was an only child and she had three children. My aunt passed from breast cancer in her mid 40’s, my mom is almost 60 and her other sister is almost 50, no ALS issues to date there. I know the family history on my grandmother’s maternal side but the paternal side is kind of incomplete. Her father passed from a heart attack in his late 50’s and he had a sister who lived into her 70’s and not sure of cause of death. My grandmother didn’t speak on them much and they lived in another state.
My PCP ordered an MRI and an EMG three weeks into symptoms the EMG was on both arms where I was having symptoms at the time and it was normal, MRI was normal as well. Symptoms persisted for about 10 weeks and then went away completely, I thought yay I’m cured. Fast forward a month and my symptoms came back. Twitching mainly in legs and tingling through arms and back. I saw a neuro back in October who totally blew me off (and maybe rightfully so) told me to keep taking my Xanax and ordered some bloodwork which has all come back normal. I recently saw another neuro who performed another MRI on the brain because he suspected MS but it was normal. He has done two clinical evals and scheduled another EMG of lower extremities just for my peace of mind but it isn’t until the end of March The neuro I recently saw has over 30 years’ experience and he doesn’t seem concerned. He actually told me at my first apt “you don’t have ALS” and that this is an obsession. When the twitching won’t go away and you have yourself convinced you are weak in the hands it makes it hard to believe. The logical part of my brain tells me that the alternating nature of this followed by the clean EMG after symptoms presented themselves and it’s been 5 months and I still pass clinical neuro exams points away from anything serious. The majority of my symptoms have been on the left side of my body (most of the twitching and “weak” feeling) accompanied with minor aches and pains and some days nothing at all. I do have HSV 2 and I have read that it can cause some of these symptoms. My current presenting symptoms are twitching in legs, feet, and hands occasionally and a sense or feeling of weakness in left hand. It is very hard to describe what it is like.
With regard to FALS I have heard that it usually begins in the lower extremities and usually at a younger age. (My grandma was 75 when diagnosed with bulbar) I am just very concerned that there is something on her paternal side that we don’t know about. My mom and husband both think I am crazy and my mom swears that if there was something that we would have known about it. I have two children and I am extremely anxious about my health. I have been debating on whether to post here or not for some time but just never have. I really fell crazy for doing it actually. I do promise I will go away if someone can please just offer some opinions on my situation, does it sound anything like ALS? If my grandmother did have a genetic form of ALS would it typically show as bulbar in other generations or could it present as limb? I’m not looking for a diagnosis just some opinions and please don’t yell at me. It bothers me that when my grandmother was diagnosed they never looked for a second opinion. I know the she probably did actually have bulbar but they never pursued any further than the one neuro. Again I am sorry to bother you all with the same old stuff you hear all the time…I really hate that this ended up being so long!
I am 33 my symptoms began back in September with alternating tingling and heavy feeling s in my arms. One day it would be my left bothering me then a few days later it wound be my right. This was followed up with mild body wide twitching and constant twitching in legs. My first concern was ALS. My grandmother was diagnosed with bulbar in 2012 and passed in April of 2013. I didn’t really know much about the disease until recently when I started reading about it on Dr. Google. (I know not the best thing to do) My grandmother was an only child and she had three children. My aunt passed from breast cancer in her mid 40’s, my mom is almost 60 and her other sister is almost 50, no ALS issues to date there. I know the family history on my grandmother’s maternal side but the paternal side is kind of incomplete. Her father passed from a heart attack in his late 50’s and he had a sister who lived into her 70’s and not sure of cause of death. My grandmother didn’t speak on them much and they lived in another state.
My PCP ordered an MRI and an EMG three weeks into symptoms the EMG was on both arms where I was having symptoms at the time and it was normal, MRI was normal as well. Symptoms persisted for about 10 weeks and then went away completely, I thought yay I’m cured. Fast forward a month and my symptoms came back. Twitching mainly in legs and tingling through arms and back. I saw a neuro back in October who totally blew me off (and maybe rightfully so) told me to keep taking my Xanax and ordered some bloodwork which has all come back normal. I recently saw another neuro who performed another MRI on the brain because he suspected MS but it was normal. He has done two clinical evals and scheduled another EMG of lower extremities just for my peace of mind but it isn’t until the end of March The neuro I recently saw has over 30 years’ experience and he doesn’t seem concerned. He actually told me at my first apt “you don’t have ALS” and that this is an obsession. When the twitching won’t go away and you have yourself convinced you are weak in the hands it makes it hard to believe. The logical part of my brain tells me that the alternating nature of this followed by the clean EMG after symptoms presented themselves and it’s been 5 months and I still pass clinical neuro exams points away from anything serious. The majority of my symptoms have been on the left side of my body (most of the twitching and “weak” feeling) accompanied with minor aches and pains and some days nothing at all. I do have HSV 2 and I have read that it can cause some of these symptoms. My current presenting symptoms are twitching in legs, feet, and hands occasionally and a sense or feeling of weakness in left hand. It is very hard to describe what it is like.
With regard to FALS I have heard that it usually begins in the lower extremities and usually at a younger age. (My grandma was 75 when diagnosed with bulbar) I am just very concerned that there is something on her paternal side that we don’t know about. My mom and husband both think I am crazy and my mom swears that if there was something that we would have known about it. I have two children and I am extremely anxious about my health. I have been debating on whether to post here or not for some time but just never have. I really fell crazy for doing it actually. I do promise I will go away if someone can please just offer some opinions on my situation, does it sound anything like ALS? If my grandmother did have a genetic form of ALS would it typically show as bulbar in other generations or could it present as limb? I’m not looking for a diagnosis just some opinions and please don’t yell at me. It bothers me that when my grandmother was diagnosed they never looked for a second opinion. I know the she probably did actually have bulbar but they never pursued any further than the one neuro. Again I am sorry to bother you all with the same old stuff you hear all the time…I really hate that this ended up being so long!