pg20
New member
- Joined
- Oct 16, 2013
- Messages
- 6
- Reason
- Loved one DX
- Country
- US
- State
- MD
- City
- Baltimore
Hi,
I've been a lurker here for about a month or so and I've read over a lot of posts in this section. I have the unfortunate situation of having a parent who was just recently diagnosed with "probable" ALS. I've read plenty of posts here of people who are panicking as to whether they have the beginning signs of ALS.
Being someone who is dealing closely with disease I felt that I wanted to relay some of my own thoughts on the subject to those who are questioning their own health.
A little background first. A year ago (last October) my father noticed that he could no longer lift his left arm past his head to a certain point. Having had rotator cuff surgery on his right side some years ago, he thought it was the left side rotator acting up and would need eventual surgery. Didn't think much more about it. There was no pain, just limited movement. So a couple months ago he decides to go get it checked out. He sets an appointment with his regular physician and his doctor agrees that there is definitely an issue there, HOWEVER, after a physical his physician felt the need to set my father up with a neurologist. My father has been on statin drugs for cholesterol for years and there have been many cases where statin drugs have caused nerve damage. My fathers physician thought that this was the case with my father.
So my father goes for a nerve test through one neurosurgeon and after that test, he is referred to another neurosurgeon for a "second opinion". Mind you, neither his regular physician or the first neurosurgeon said anything about an ALS diagnosis to my father. Sure it was in the back of his mind but you'd think that one of them may have mentioned ALS as a possibility.
So a few weeks later my parents sit down with the second neurosurgeon. My parents are quite annoyed at this point and really want some sort of answer as to what is going on. So the doctor walks in and the first thing he says is "so, no one has talked to you in detail about these results?" And then he dropped the bomb on them, preliminary ALS diagnosis. Needless to say, they were floored by the news. As we all were.
There are still some other tests that need to be done to rule out all possibilities of it being something else which is why I stated "probable" ALS diagnosis but his doctors feel pretty confident that this is what we are dealing with.
If there is one promising thing to hang onto its that the ALS seems to be slower in progression. In a full years time my father has had no other symptoms other than the arm issue. He's had swallowing tests which came back normal for a typical 58 year old, no slurred speech, and no other muscle weakness anywhere else other than the one arm.
So here we are. Now we just move forward and deal with things as they come. Or hold hope that the diagnosis is wrong.
Now, here I am. 34 years old and married with two children. My first thought is, "can I get this too?". Luckily we have an extensive history of family medical records. There have been no other documented cases of ALS on either side of my family. Because of this, my fathers doctors say that my brothers and I have nothing to worry about. My father is one of the random unfortunate ones that this disease has decided to strike.
So, while our personal lives are probably going to be turned upside down for the foreseeable future and no family history, I guess I have nothing to worry about?
HOWEVER, while that may be the case, I still worry. Can't help it. I'm stressed. I have anxiety. I went on medication to help but it actually made me feel worse so I stopped taking it. I'm just going to do my best to deal with this with a clear head.
So now that I've spilled my guts, I want to give some advice to the people who want answers about symptoms that they "think" they may have.
First, go to your primary physician and have a standard physical. That's what I did and that is what my father did. If there is something wrong, your doctor should notice. My doctor is well aware of my fathers condition and saw nothing in me that would suggest to him that I'm showing any signs of muscle issues or weakness.
Second, I have muscle twitches. I work out, drink a lot of caffeine, and definitely do not drink as much water as I should on a daily basis. I'm stressed and have anxiety. Just one of these actions will cause muscle twitching in parts of your body and I'm a multiple offender as you can see. I've had muscle twitches at times for many many years. The key is that I don't have any sort of muscle weakness. Sure, my muscles will hurt from working out but in ALS, your muscles won't hurt. They'll just stop working. Just like my father, he had no pain. Just complete loss of mobility past a certain point when raising his arm. Yes, he gets twitching in his shoulder but that is coupled with the loss of mobility. There is no "pins and needles" or numbness either. It just doesn't work past a certain point.
Third, would knowing if you had a debilitating, incurable disease make you feel any better? Chances are that you probably don't have it and no one here is going to be able to diagnose you over the internet. Right now I wish my father never went to see his doctor. I wish we didn't have to live with this diagnosis right now. My mother is a complete train wreck and now they both sit around waiting for the next issue to pop up. I wish we didn't find out until we were further down the road. At least the time right now where my father is fully capable and mobile wouldn't be spent wondering and waiting for the next problem to pop up. It's like once the diagnosis was made, the clock started ticket for everyone. Do you really want to do that to yourself?
I've been a lurker here for about a month or so and I've read over a lot of posts in this section. I have the unfortunate situation of having a parent who was just recently diagnosed with "probable" ALS. I've read plenty of posts here of people who are panicking as to whether they have the beginning signs of ALS.
Being someone who is dealing closely with disease I felt that I wanted to relay some of my own thoughts on the subject to those who are questioning their own health.
A little background first. A year ago (last October) my father noticed that he could no longer lift his left arm past his head to a certain point. Having had rotator cuff surgery on his right side some years ago, he thought it was the left side rotator acting up and would need eventual surgery. Didn't think much more about it. There was no pain, just limited movement. So a couple months ago he decides to go get it checked out. He sets an appointment with his regular physician and his doctor agrees that there is definitely an issue there, HOWEVER, after a physical his physician felt the need to set my father up with a neurologist. My father has been on statin drugs for cholesterol for years and there have been many cases where statin drugs have caused nerve damage. My fathers physician thought that this was the case with my father.
So my father goes for a nerve test through one neurosurgeon and after that test, he is referred to another neurosurgeon for a "second opinion". Mind you, neither his regular physician or the first neurosurgeon said anything about an ALS diagnosis to my father. Sure it was in the back of his mind but you'd think that one of them may have mentioned ALS as a possibility.
So a few weeks later my parents sit down with the second neurosurgeon. My parents are quite annoyed at this point and really want some sort of answer as to what is going on. So the doctor walks in and the first thing he says is "so, no one has talked to you in detail about these results?" And then he dropped the bomb on them, preliminary ALS diagnosis. Needless to say, they were floored by the news. As we all were.
There are still some other tests that need to be done to rule out all possibilities of it being something else which is why I stated "probable" ALS diagnosis but his doctors feel pretty confident that this is what we are dealing with.
If there is one promising thing to hang onto its that the ALS seems to be slower in progression. In a full years time my father has had no other symptoms other than the arm issue. He's had swallowing tests which came back normal for a typical 58 year old, no slurred speech, and no other muscle weakness anywhere else other than the one arm.
So here we are. Now we just move forward and deal with things as they come. Or hold hope that the diagnosis is wrong.
Now, here I am. 34 years old and married with two children. My first thought is, "can I get this too?". Luckily we have an extensive history of family medical records. There have been no other documented cases of ALS on either side of my family. Because of this, my fathers doctors say that my brothers and I have nothing to worry about. My father is one of the random unfortunate ones that this disease has decided to strike.
So, while our personal lives are probably going to be turned upside down for the foreseeable future and no family history, I guess I have nothing to worry about?
HOWEVER, while that may be the case, I still worry. Can't help it. I'm stressed. I have anxiety. I went on medication to help but it actually made me feel worse so I stopped taking it. I'm just going to do my best to deal with this with a clear head.
So now that I've spilled my guts, I want to give some advice to the people who want answers about symptoms that they "think" they may have.
First, go to your primary physician and have a standard physical. That's what I did and that is what my father did. If there is something wrong, your doctor should notice. My doctor is well aware of my fathers condition and saw nothing in me that would suggest to him that I'm showing any signs of muscle issues or weakness.
Second, I have muscle twitches. I work out, drink a lot of caffeine, and definitely do not drink as much water as I should on a daily basis. I'm stressed and have anxiety. Just one of these actions will cause muscle twitching in parts of your body and I'm a multiple offender as you can see. I've had muscle twitches at times for many many years. The key is that I don't have any sort of muscle weakness. Sure, my muscles will hurt from working out but in ALS, your muscles won't hurt. They'll just stop working. Just like my father, he had no pain. Just complete loss of mobility past a certain point when raising his arm. Yes, he gets twitching in his shoulder but that is coupled with the loss of mobility. There is no "pins and needles" or numbness either. It just doesn't work past a certain point.
Third, would knowing if you had a debilitating, incurable disease make you feel any better? Chances are that you probably don't have it and no one here is going to be able to diagnose you over the internet. Right now I wish my father never went to see his doctor. I wish we didn't have to live with this diagnosis right now. My mother is a complete train wreck and now they both sit around waiting for the next issue to pop up. I wish we didn't find out until we were further down the road. At least the time right now where my father is fully capable and mobile wouldn't be spent wondering and waiting for the next problem to pop up. It's like once the diagnosis was made, the clock started ticket for everyone. Do you really want to do that to yourself?
mostly because I agree with you. People need to take their hypochondria to thier doctor not a web forum. If you end up joining our ranks, then I'm truly sorry. But pg20 is right; no one can diagnose you here. And frankly, you really don't want to be.
