johnhalliganphi
New member
- Joined
- Feb 22, 2024
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CA
- City
- Modesto
Hello all,
My name is John. Currently trying to figure out if my symptoms are mnm in nature but traversing medi cal in the central valley is not easy.
Some background and symptoms. I am 53 and live in Modesto. It started in my hands maybe 2 years ago, but also had myoclonic jerks in shoulders even before that. I didn't persue doctors at the time because I have multiple personality disorders eg.. borderline, paranoia, anxiety, avoidant, and histrionic pds. To say that can lead to health anxiety is a given. So I figured it's my head cuz they always say it is. The progression in those 3 years has been subtle. My hands have been wonky but, was dropping s---.
I am/was alcoholic. Admittedly the effects can cause similarities to als eg. Alcoholic myopathy, but still there are clear differences. I believe if I get in front of the right doctor they would know.
More background, broke my ankle recently, yes I was drunk but have been a drunk for years and have not. Broken anything. From that, they are not sure the PE was was ankle or genetic, but I got a double pulmonary embulissm a few weeks ago and coded twice. If I had waited 5 more minutes to call 911 I would be dead. Thanks doctors hospital in Modesto for saving my life. Before that I was my was short of breath was also related. That has gone since I have gotten out of the hospital. My oxygen was 98. She wouldnt refer to a pulmonologist cuz they would just say keep taking liquids like you are. So at least lungs working ok.
At said appointment I told her I was more worried about my hands and arms. Mostly jerks I have had failures. Can still do fine motor things, but I have concentrate hard to hold my phone in one hand for it not to drop. And it shakes.
I wanted a referral to a neurologist. She said it's cuz your are an alcoholic and wouldnt even consider it. I get that alcoholism can cause myopathy, but als and alcoholic myopthaothy have differences. She just said see you in three months more related to the PE.
I have a broken ankle, I drop s---. I have some muscle loss, and I agree that can be explained by alcohol and less than 1 meal a day, but again I have some specific hand issues that point to als.
My frustration is, if you are an alcoholic, doctors will blame that on everything and not look for a cause otherwise. I think that is lazy doctoring, but also there is a major doctor shortage in the central valley.
Why I think it's not alcohol is it started in my. Hands not my shoulders. I think my myoclonic jerks were anxiety related. But now my shoulders can jerk when I want them too and I can almost dislocate them my self which point to weakness.
I have a referral to a diff gp on the 28th. I need to see a neurologist.
Any advice on how to get that referral. I did my best in the last doctor appt to not diagnose myself and offer symptoms, but that didn't land me anywhere.
Thanks for the help.
John
My name is John. Currently trying to figure out if my symptoms are mnm in nature but traversing medi cal in the central valley is not easy.
Some background and symptoms. I am 53 and live in Modesto. It started in my hands maybe 2 years ago, but also had myoclonic jerks in shoulders even before that. I didn't persue doctors at the time because I have multiple personality disorders eg.. borderline, paranoia, anxiety, avoidant, and histrionic pds. To say that can lead to health anxiety is a given. So I figured it's my head cuz they always say it is. The progression in those 3 years has been subtle. My hands have been wonky but, was dropping s---.
I am/was alcoholic. Admittedly the effects can cause similarities to als eg. Alcoholic myopathy, but still there are clear differences. I believe if I get in front of the right doctor they would know.
More background, broke my ankle recently, yes I was drunk but have been a drunk for years and have not. Broken anything. From that, they are not sure the PE was was ankle or genetic, but I got a double pulmonary embulissm a few weeks ago and coded twice. If I had waited 5 more minutes to call 911 I would be dead. Thanks doctors hospital in Modesto for saving my life. Before that I was my was short of breath was also related. That has gone since I have gotten out of the hospital. My oxygen was 98. She wouldnt refer to a pulmonologist cuz they would just say keep taking liquids like you are. So at least lungs working ok.
At said appointment I told her I was more worried about my hands and arms. Mostly jerks I have had failures. Can still do fine motor things, but I have concentrate hard to hold my phone in one hand for it not to drop. And it shakes.
I wanted a referral to a neurologist. She said it's cuz your are an alcoholic and wouldnt even consider it. I get that alcoholism can cause myopathy, but als and alcoholic myopthaothy have differences. She just said see you in three months more related to the PE.
I have a broken ankle, I drop s---. I have some muscle loss, and I agree that can be explained by alcohol and less than 1 meal a day, but again I have some specific hand issues that point to als.
My frustration is, if you are an alcoholic, doctors will blame that on everything and not look for a cause otherwise. I think that is lazy doctoring, but also there is a major doctor shortage in the central valley.
Why I think it's not alcohol is it started in my. Hands not my shoulders. I think my myoclonic jerks were anxiety related. But now my shoulders can jerk when I want them too and I can almost dislocate them my self which point to weakness.
I have a referral to a diff gp on the 28th. I need to see a neurologist.
Any advice on how to get that referral. I did my best in the last doctor appt to not diagnose myself and offer symptoms, but that didn't land me anywhere.
Thanks for the help.
John
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