goolia75
Active member
- Joined
- Jun 12, 2013
- Messages
- 45
- Reason
- Lost a loved one
- Diagnosis
- 05/2016
- Country
- US
- State
- UT
- City
- Pleasant Grove
I'm a 38 year old married woman with an 11 year old daughter and 13 year old son. I live in Utah. Back in May, I started to notice arm weakness, mostly in my left arm. That was my only symptom at first. I got very worried about it one evening and panicked to my husband telling him, "I know something is wrong with me, this doesn't feel right". For the next couple of weeks, I ignored it and went on with my life. It actually felt like it got better for a short time.
About a month ago, I woke up one morning to twitching in my left arm. The twitching was on the outside of the arm, just above the elbow. It was happening every couple of minutes and continued for 2 days before spreading to my entire body. That's when I first went to the doctor. I started taking supplements, like magnesium, but nothing changed. My arm weakness increased then my right arm started to feel weak also. Now, both of my arms have about the same weakness in them. I am also noticing a small dent near my pinky knuckle on my right hand. My arms shake if I try to lift anything remotely heavy. I can still open lids and lift a gallon of milk, but my hand feels heavy, shaky, and clumsy.
Like others, I looked up muscle weakness and twitching online and ended up a nervous wreck with the results.
I went to my doctor who tested my reflexes and said I was hyperreflexic. He then decided to send me to a neurologist. They did a nerve conduction test on me, which came back normal. They wanted to send me to a different neurologist who specializes in als because of my worries with that disease. I went to the U of U als clinic in SLC, Utah and saw Dr. Gibson. She did a physical exam which consisted of strength tests and reflexes. She said I was still strong, looked me straight in the eyes and said "congratulations, you do not have als". She didn't do the emg for whatever reason. I wish she would have just done it. She said I tested positive for Hoffman's reflex, but showed a negative Babinski. I know she's the doctor, but I don't understand how she can "know" I don't have it based on a 15 minute exam in the patient room.
I have been having issues with my thinking and memory so I was sent in for an mri a little over a week ago. It came back that I have about 10 very small round lesions (less than 2 mm in size) in my frontal lobe. The doctor said the lesions were atypical (not normal) for MS and were more likely to be caused from a migraine disorder or mini strokes. I was having bouts of high blood pressure a few months ago (unusual for me as it's always been normal), but recently my bp has been more on the low side (106/56 a few days ago). I have recently read that frontal lobe dementia can sometimes affect people with als, so now I'm worried I have that too.
My arms are very weak, my legs feel weak and tired, the last 2 days I feel like my diaphragm is not working as well and my breathing is labored, I have twitches all over my body from head to toe. I think the only place I haven't twitched is my teeth. I've lost more than 15 lbs in the last month, I get dizzy, my memory is not great, and I'm terrified it's all because of als. I have shared my concerns and paranoia with my family. My husband thinks I'm just out of shape and more water and exercise will help. He is convinced I have ms, but I don't think I do. My mom lives in Arizona and came up on a moment's notice last week because of how panicked and emotional I was, especially after my mri results came back. She was here for a week with me, then went back home. She knows something is wrong with me, but I also think she believes it's ms.
I feel like a paranoid hypochondriac lately and I've never been like this before. Is it possible that the doctors are missing something because I'm not showing clinical weakness or atrophy yet? Can weakness from als start in the arms then move to other parts of the body, like my legs, within a matter of weeks? If I have hyperreflexes and positive Hoffman's, aren't those signs of als? I have read all of the stickies, but I've also read that symptoms can vary from one person to the next. I was told by a doctor a couple of years ago that my reflexes were brisk and he said it "was concerning", but that was as far as it went. I've had the weakness for 2 months and the twitching for 1 month. The last 2 mornings, I woke up around 5 am with such bad shortness of breath I had to get out of bed. It usually gets better as the day goes on. It just feels like my diaphragm doesn't want move. I guess I would just like to know if als symptoms can progress as quickly as mine have.
Should I push to have the emg? I feel like my health has come crashing down on me in the last couple of months. I was recently diagnosed with SCDS (superior canal dehiscence syndrome), which is supposedly a "very rare" inner ear disorder. It has been very stressful for me because of the symptoms that come along with it (dizziness, high pitched tinnitus, mild hearing loss, hearing my eyes moving in my head, etc).
I've been a silent member on this forum for the last several weeks, but I think it's time for me to interact a little. I appreciate any advice or thoughts that any of you might have.
About a month ago, I woke up one morning to twitching in my left arm. The twitching was on the outside of the arm, just above the elbow. It was happening every couple of minutes and continued for 2 days before spreading to my entire body. That's when I first went to the doctor. I started taking supplements, like magnesium, but nothing changed. My arm weakness increased then my right arm started to feel weak also. Now, both of my arms have about the same weakness in them. I am also noticing a small dent near my pinky knuckle on my right hand. My arms shake if I try to lift anything remotely heavy. I can still open lids and lift a gallon of milk, but my hand feels heavy, shaky, and clumsy.
Like others, I looked up muscle weakness and twitching online and ended up a nervous wreck with the results.
I went to my doctor who tested my reflexes and said I was hyperreflexic. He then decided to send me to a neurologist. They did a nerve conduction test on me, which came back normal. They wanted to send me to a different neurologist who specializes in als because of my worries with that disease. I went to the U of U als clinic in SLC, Utah and saw Dr. Gibson. She did a physical exam which consisted of strength tests and reflexes. She said I was still strong, looked me straight in the eyes and said "congratulations, you do not have als". She didn't do the emg for whatever reason. I wish she would have just done it. She said I tested positive for Hoffman's reflex, but showed a negative Babinski. I know she's the doctor, but I don't understand how she can "know" I don't have it based on a 15 minute exam in the patient room.
I have been having issues with my thinking and memory so I was sent in for an mri a little over a week ago. It came back that I have about 10 very small round lesions (less than 2 mm in size) in my frontal lobe. The doctor said the lesions were atypical (not normal) for MS and were more likely to be caused from a migraine disorder or mini strokes. I was having bouts of high blood pressure a few months ago (unusual for me as it's always been normal), but recently my bp has been more on the low side (106/56 a few days ago). I have recently read that frontal lobe dementia can sometimes affect people with als, so now I'm worried I have that too.
My arms are very weak, my legs feel weak and tired, the last 2 days I feel like my diaphragm is not working as well and my breathing is labored, I have twitches all over my body from head to toe. I think the only place I haven't twitched is my teeth. I've lost more than 15 lbs in the last month, I get dizzy, my memory is not great, and I'm terrified it's all because of als. I have shared my concerns and paranoia with my family. My husband thinks I'm just out of shape and more water and exercise will help. He is convinced I have ms, but I don't think I do. My mom lives in Arizona and came up on a moment's notice last week because of how panicked and emotional I was, especially after my mri results came back. She was here for a week with me, then went back home. She knows something is wrong with me, but I also think she believes it's ms.
I feel like a paranoid hypochondriac lately and I've never been like this before. Is it possible that the doctors are missing something because I'm not showing clinical weakness or atrophy yet? Can weakness from als start in the arms then move to other parts of the body, like my legs, within a matter of weeks? If I have hyperreflexes and positive Hoffman's, aren't those signs of als? I have read all of the stickies, but I've also read that symptoms can vary from one person to the next. I was told by a doctor a couple of years ago that my reflexes were brisk and he said it "was concerning", but that was as far as it went. I've had the weakness for 2 months and the twitching for 1 month. The last 2 mornings, I woke up around 5 am with such bad shortness of breath I had to get out of bed. It usually gets better as the day goes on. It just feels like my diaphragm doesn't want move. I guess I would just like to know if als symptoms can progress as quickly as mine have.
Should I push to have the emg? I feel like my health has come crashing down on me in the last couple of months. I was recently diagnosed with SCDS (superior canal dehiscence syndrome), which is supposedly a "very rare" inner ear disorder. It has been very stressful for me because of the symptoms that come along with it (dizziness, high pitched tinnitus, mild hearing loss, hearing my eyes moving in my head, etc).
I've been a silent member on this forum for the last several weeks, but I think it's time for me to interact a little. I appreciate any advice or thoughts that any of you might have.
