artist09
Member
- Joined
- May 29, 2011
- Messages
- 18
- Reason
- CALS
- Diagnosis
- 06/2011
- Country
- Uni
- State
- TN
- City
- Memphis
I am a 35 year old female with 3 kids ages 1-6. My single 66 year old father was diagnosed with ALS in June 2011. He has had weakness since January 2011. So, of course, at the point of his diagnosis I read a lot about ALS and when I read about twitching as a symptom I realized that I too twitch. I've noticed it here and there in the past, put never put much thought into it. But, since his diagnosis I've been noticing twitches all over my body. Although felt everywhere, for a while they were most frequent in my upper back by my shoulder blades. They still twitch slightly on off and on there, but now it is my left thumb that gives me the most trouble. One day it suddenly started twitching visibly on it's own and after that mild twitching daily...off and on...not constant. My regular MD thinks it is just the stress and anxiety from dealing with my father and his ALS diagnosis. (I have had a very hard time with it as we are very close.) She put me on Klonopin and Zoloft for the Anxiety. I tried to get off the Klonopin recently thinking it might be increasing the twitching, but it was the opposite. As I tapered off the Klonopin, the twiching was worse. So, at that point I convinced myself that it was just the anxiety and it just happened to be a symptom of my father's ALS.
But, the scary thing is that now (just in the past three weeks) my left thumb "locks up" or stiffens up briefly on occasion when I'm opening something or squeezing something like toothpaste for example usually followed by a little twitching. It is like my joint won't release like it should. No pain. It doesn't always do this when opening things, but enough to make me a little concerned. I find myself avoiding using that hand. I don't notice visible atrophy, but my left hand does seem weaker, but perhaps it has always been since I'm right handed. My right hand is one part of my body that doesn't twitch and I have noticed nothing different with it.
As those of you with ALS or a caregiver of an ALS patient know, I am having to take my Dad to Dr. after Dr. He goes to the VA, so we have to go through all of the "hoops"...C&P exams....regular exams...breathing tests....occupational therapy.....social work etc. So, yes, I am under a lot of stress, worry, and anxiety dealing with this and 3 kids. I'm also seeking therapy for ways to deal with coping with all of this stress and anxiety....but guess it is not working since I'm on this forum right now =. :-? I've also dropped 20 pounds during this time and am down to an unhealthy 108 for my 5'4 frame. I'm trying to eat more and drinking protein shakes to gain weight at the suggestion of my Dr. I take a body tone class at the YMCA. It makes me feel better to workout and be able to see muscle definition in my body. When working out, I don't notice weakness in the major muscles although they all twitch.
I haven't read anything about thumb locking up being a symptom of ALS, however stiffness I have read, but not sure if these are the same and if that would occur in the thumb. My dad does't have the symptom of stiffness in his ALS affected arms, but I've been too scared to ask him if his thumb locks up. I guess I'm afraid of the answer.
So, am I concerned about my own health for nothing? I am right?
Should I have my father have the genetic test just to be sure? As far as we know we have never had another case of ALS in the family. His parents lived long lives. He had two grandparents die young of other causes though and one of those I know very little about that side of the family, so I couldn't rule out an inheritance there. I am aware that FALS only occurs in 10% of ALS patients and without a known family history it would be rare for my father to have FALS. However, on my mother's side she does have a half aunt that had ALS and a half uncle (sister to the ALS patient) currently living with Multiple Systems Atrophy. (somewhere between ALS & Parkinsons.) However, they think these conditions came from the other side of the family...not the side I am linked too....since they have family stories of ancestors who couldn't walk, etc. Their mother died young and it is believed it came from her side and I'm related on their father's side. Remember they are "half" great's to me.
I guess I just need some reassurance from you guys that the odds my father and I would have ALS at the same time would be quite rare, or should I get an EMG based on my symptoms just to be sure?
I just need to be sure I'm in the best health possible in order to care for my 3 children and disabled father.
BTW...My father by the way is doing great. He is staying positive and is a fighter. I wish I had inherited his optimism, but as you have well noticed by now, I didn't.
I appreciate any support or feedback, just please don't be harsh. I may not have ALS, but the reality is that my father does, so I know what you are all going though and I'm praying for a cure everyday.
With respect,
An overwhelmed ALS caregiver and Mom.
But, the scary thing is that now (just in the past three weeks) my left thumb "locks up" or stiffens up briefly on occasion when I'm opening something or squeezing something like toothpaste for example usually followed by a little twitching. It is like my joint won't release like it should. No pain. It doesn't always do this when opening things, but enough to make me a little concerned. I find myself avoiding using that hand. I don't notice visible atrophy, but my left hand does seem weaker, but perhaps it has always been since I'm right handed. My right hand is one part of my body that doesn't twitch and I have noticed nothing different with it.
As those of you with ALS or a caregiver of an ALS patient know, I am having to take my Dad to Dr. after Dr. He goes to the VA, so we have to go through all of the "hoops"...C&P exams....regular exams...breathing tests....occupational therapy.....social work etc. So, yes, I am under a lot of stress, worry, and anxiety dealing with this and 3 kids. I'm also seeking therapy for ways to deal with coping with all of this stress and anxiety....but guess it is not working since I'm on this forum right now =. :-? I've also dropped 20 pounds during this time and am down to an unhealthy 108 for my 5'4 frame. I'm trying to eat more and drinking protein shakes to gain weight at the suggestion of my Dr. I take a body tone class at the YMCA. It makes me feel better to workout and be able to see muscle definition in my body. When working out, I don't notice weakness in the major muscles although they all twitch.
I haven't read anything about thumb locking up being a symptom of ALS, however stiffness I have read, but not sure if these are the same and if that would occur in the thumb. My dad does't have the symptom of stiffness in his ALS affected arms, but I've been too scared to ask him if his thumb locks up. I guess I'm afraid of the answer.
So, am I concerned about my own health for nothing? I am right?
Should I have my father have the genetic test just to be sure? As far as we know we have never had another case of ALS in the family. His parents lived long lives. He had two grandparents die young of other causes though and one of those I know very little about that side of the family, so I couldn't rule out an inheritance there. I am aware that FALS only occurs in 10% of ALS patients and without a known family history it would be rare for my father to have FALS. However, on my mother's side she does have a half aunt that had ALS and a half uncle (sister to the ALS patient) currently living with Multiple Systems Atrophy. (somewhere between ALS & Parkinsons.) However, they think these conditions came from the other side of the family...not the side I am linked too....since they have family stories of ancestors who couldn't walk, etc. Their mother died young and it is believed it came from her side and I'm related on their father's side. Remember they are "half" great's to me.
I guess I just need some reassurance from you guys that the odds my father and I would have ALS at the same time would be quite rare, or should I get an EMG based on my symptoms just to be sure?
I just need to be sure I'm in the best health possible in order to care for my 3 children and disabled father.
BTW...My father by the way is doing great. He is staying positive and is a fighter. I wish I had inherited his optimism, but as you have well noticed by now, I didn't.
I appreciate any support or feedback, just please don't be harsh. I may not have ALS, but the reality is that my father does, so I know what you are all going though and I'm praying for a cure everyday.
With respect,
An overwhelmed ALS caregiver and Mom.
