Jjohns
New member
- Joined
- Nov 13, 2016
- Messages
- 5
- Reason
- Loved one DX
- Diagnosis
- 00/0000
- Country
- US
- State
- UT
- City
- Clinton
Hello all,
My name is Josh. I am 39 years old. My family has 4 generations of ALS. My mother has it, my grand-mother died of it, my great grand-father died of it, my great great grand-father is believed to have died of it (but his death certificate says "creeping paralysis") and my mother's cousin from the same line died of it. The men in the family seem to get it younger and die faster than the women.
Approximately 2 years ago I started getting cramps (primarily in my left hand and left calf), but understood the cramps could be caused by anything. Then twitching in the hands, and forearms. Started gettin clumsy, dropping things especially with my left hand. Finally I found I could not lift something I could just a few months prior. My wife and mother convinced me to see a neurologist about a year ago when my wife noted fasciculations in my left forearm and left shoulder and I began to get very fatigued by normal activities of the day. I was resistant because I had not had experienced clinical "weakness" I just subjectively noted a marked decrease in strength. But my mother, an ALS patient, persuaded me.
The doctor performed a physical exam. Not only had I had reflexes checked by my doctors before, but I am a nurse so I have had my reflexes checked many multiples of times during my training. I had never experienced reflexes like I did in that exam, but no weakness. The doctor told me almost immediately that he did not believe I had ALS, but ordered a battery of blood work and an MRI.
At the follow up he said everything looked good and that the blood work and MRI were negative. He then took me in another room to perform an EMG. He did this on my right arm and right leg, which I thought was abnormal since my "symptoms" seemed worse on the left. He told me "at this time you do not have ALS, but I would like to see you back in 3 months".
The three months came and went, the follow up consisted of me reporting more of the same. Maybe a little worse, certainly not better. "See you again in 3 months". No further testing. 2nd follow up was a carbon copy except he seemed to hint that it was in my head, as though I hoped for this God aweful disease I watched consume my grandmother and is ravaging my mother currently. "See you in 3 months".
Now approximately 3 months ago I had that last follow up. We sat in his office. I reported more frequency of dropping things and highly increased frequency of spasms and fasciculations now often in my left pectoral, left deltoid, and left bicep. His response was, "I believe you have benign fasciculation syndrome". I told him I was moving out of state and asked if I needed to establish a neurologist there. He said, "I don't think so." I left feeling stupid for my doubts and fears, for the money I spent seeing a specialist 3 times, and insulted that the symptoms were "in my head".
Here is the rub...in the last 3 months I have dropped from 381 lbs to 347 lbs without any change to my diet or exercise. My "subjective weakness" has become rediculous. A gallon of milk is enormously heavy, my own head seems to weigh a ton. I am pretty sure the lost weight is muscle mass from my chest, shoulders, and upper arms (left being worse than right), my wife says I have choked while eating more in the last 2 months than in our 17 years of marriage. I fatigue so easily and my muscles lose strength and ultimately ache as though I had worked out heavily all day just doing a shift at work or walking around the store.
I saw my new PCP for something else but talked about the weight loss, fatigue, and subjective weakness. He ran tests for electrolytes, diabetes, and thyroid conditions (all negative). He wants me to see a neurologist again. I don't want to go through the humiliation again. I don't have foot drop, I don't fall, I have no problems with buttons. Yes I drop things so often I have changed my practice for administering medication at work so I don't drop them on the floor as often (but I still do a lot).
I have to use a lot of accessory muscles and a lot more effort, but I can do all the activities I used to do. I just went from being a very strong 6ft 4 380lb ex-athlete to struggling to pick up my 1 and 3 year olds. The subjective was dismissed by the previous neuro and often by the members of this forum. So I don't know if it is worth the time and money to go back.
Thoughts, input, or advice?
My name is Josh. I am 39 years old. My family has 4 generations of ALS. My mother has it, my grand-mother died of it, my great grand-father died of it, my great great grand-father is believed to have died of it (but his death certificate says "creeping paralysis") and my mother's cousin from the same line died of it. The men in the family seem to get it younger and die faster than the women.
Approximately 2 years ago I started getting cramps (primarily in my left hand and left calf), but understood the cramps could be caused by anything. Then twitching in the hands, and forearms. Started gettin clumsy, dropping things especially with my left hand. Finally I found I could not lift something I could just a few months prior. My wife and mother convinced me to see a neurologist about a year ago when my wife noted fasciculations in my left forearm and left shoulder and I began to get very fatigued by normal activities of the day. I was resistant because I had not had experienced clinical "weakness" I just subjectively noted a marked decrease in strength. But my mother, an ALS patient, persuaded me.
The doctor performed a physical exam. Not only had I had reflexes checked by my doctors before, but I am a nurse so I have had my reflexes checked many multiples of times during my training. I had never experienced reflexes like I did in that exam, but no weakness. The doctor told me almost immediately that he did not believe I had ALS, but ordered a battery of blood work and an MRI.
At the follow up he said everything looked good and that the blood work and MRI were negative. He then took me in another room to perform an EMG. He did this on my right arm and right leg, which I thought was abnormal since my "symptoms" seemed worse on the left. He told me "at this time you do not have ALS, but I would like to see you back in 3 months".
The three months came and went, the follow up consisted of me reporting more of the same. Maybe a little worse, certainly not better. "See you again in 3 months". No further testing. 2nd follow up was a carbon copy except he seemed to hint that it was in my head, as though I hoped for this God aweful disease I watched consume my grandmother and is ravaging my mother currently. "See you in 3 months".
Now approximately 3 months ago I had that last follow up. We sat in his office. I reported more frequency of dropping things and highly increased frequency of spasms and fasciculations now often in my left pectoral, left deltoid, and left bicep. His response was, "I believe you have benign fasciculation syndrome". I told him I was moving out of state and asked if I needed to establish a neurologist there. He said, "I don't think so." I left feeling stupid for my doubts and fears, for the money I spent seeing a specialist 3 times, and insulted that the symptoms were "in my head".
Here is the rub...in the last 3 months I have dropped from 381 lbs to 347 lbs without any change to my diet or exercise. My "subjective weakness" has become rediculous. A gallon of milk is enormously heavy, my own head seems to weigh a ton. I am pretty sure the lost weight is muscle mass from my chest, shoulders, and upper arms (left being worse than right), my wife says I have choked while eating more in the last 2 months than in our 17 years of marriage. I fatigue so easily and my muscles lose strength and ultimately ache as though I had worked out heavily all day just doing a shift at work or walking around the store.
I saw my new PCP for something else but talked about the weight loss, fatigue, and subjective weakness. He ran tests for electrolytes, diabetes, and thyroid conditions (all negative). He wants me to see a neurologist again. I don't want to go through the humiliation again. I don't have foot drop, I don't fall, I have no problems with buttons. Yes I drop things so often I have changed my practice for administering medication at work so I don't drop them on the floor as often (but I still do a lot).
I have to use a lot of accessory muscles and a lot more effort, but I can do all the activities I used to do. I just went from being a very strong 6ft 4 380lb ex-athlete to struggling to pick up my 1 and 3 year olds. The subjective was dismissed by the previous neuro and often by the members of this forum. So I don't know if it is worth the time and money to go back.
Thoughts, input, or advice?
Last edited by a moderator: