Signe
Active member
- Joined
- Aug 17, 2017
- Messages
- 88
- Reason
- PALS
- Diagnosis
- 04/2019
- Country
- US
- State
- IA
- City
- Lansing
I am needing someone to talk with. I don't know what is wrong with me or if anything is. I am trying not to diagnose myself or dwell on my symptoms but this is difficult and I must admit adding to my issues. I don't want to wear my family out with my concerns.
This is my current situation. Last January I just started talking funny, even had people ask if I was drinking. I can talk slower and then talk some better but I do talk different than normal. It can get sounding nasally. At times when I eating especially it's like my tongue freezes and locks. It has even cramped like a Charlie horse. This seems worse when I'm fatigued or talking a lot as well if I'm chewing such as at a dinner party.
My throat has changed in appearance that's hard to describe, it seems smaller and the cord on one side has disappeared.
I noticed my tongue having apparent fasticulasions. Now when I noticed the fasticulasions I went to my GP. He referred me to a neurologist.
My mother had ALS, so I was very concerned about these symptoms. The neurologist confirmed the fasticulasions and said he saw enough to do a EMG and MRI. The GP had also down a battery of labs.
The EMG of my arms and legs was negative. The MRI showed scattered t2 hyperintensities and mild degeneration in my neck. I felt complete relief and was positive I would improve with some rest and relaxation as the neurologist suggested.
A follow-up appointment was scheduled. At the follow-up appointment a month later, I had no improvement, i in fact seemed worse. The neurologist seemed surprised and offered to send me to an ALS specialist.
I am forgetting to add the other symptoms I seem to have. My right arm, doesn't work right trying to use the mouse on the computer a certain way I can't do. My hand is stiff and I'm clumsy doing things like opening the mail or packages like zip lock baggies.
Now I'm trying not to stress and dwell on this, but you know that seems harder and harder. I am fatigued easily and have lost some weight. I have muscle spasms in my throat that just about put me over the edge.
Then to make it worse I think back to the last year and remember odd things....like tripping repeatedly, choking a lot, not being able to raise my foot to do something. I worked road construction and needed to lift my foot repeatedly to push pins in the ground, I just couldn't do it.
I'm 57 years old and I lost my mother to ALS. No other known family incidents of I that I know of though. I am either exhibitin syptoms of ALS because of stress and grieving for my mother or I have it.
My neurologist told me that I needed to wait and when I have my next appointment he'd redo the EMG. He said I would either get better or worse. He said if I get worse to come back sooner and see about a referral to Rochester.
I just am going buggy waiting. I think it seems worse but I am truly trying to ignore it but it is a difficult time for me. I remember too much of my mother I think and I realized it was a good two years before she was diagnosed...the problem with that was, she died 60 days later. Some one tell me to relax, you don't have ALS...get a box of chocolate and destress...
This is my current situation. Last January I just started talking funny, even had people ask if I was drinking. I can talk slower and then talk some better but I do talk different than normal. It can get sounding nasally. At times when I eating especially it's like my tongue freezes and locks. It has even cramped like a Charlie horse. This seems worse when I'm fatigued or talking a lot as well if I'm chewing such as at a dinner party.
My throat has changed in appearance that's hard to describe, it seems smaller and the cord on one side has disappeared.
I noticed my tongue having apparent fasticulasions. Now when I noticed the fasticulasions I went to my GP. He referred me to a neurologist.
My mother had ALS, so I was very concerned about these symptoms. The neurologist confirmed the fasticulasions and said he saw enough to do a EMG and MRI. The GP had also down a battery of labs.
The EMG of my arms and legs was negative. The MRI showed scattered t2 hyperintensities and mild degeneration in my neck. I felt complete relief and was positive I would improve with some rest and relaxation as the neurologist suggested.
A follow-up appointment was scheduled. At the follow-up appointment a month later, I had no improvement, i in fact seemed worse. The neurologist seemed surprised and offered to send me to an ALS specialist.
I am forgetting to add the other symptoms I seem to have. My right arm, doesn't work right trying to use the mouse on the computer a certain way I can't do. My hand is stiff and I'm clumsy doing things like opening the mail or packages like zip lock baggies.
Now I'm trying not to stress and dwell on this, but you know that seems harder and harder. I am fatigued easily and have lost some weight. I have muscle spasms in my throat that just about put me over the edge.
Then to make it worse I think back to the last year and remember odd things....like tripping repeatedly, choking a lot, not being able to raise my foot to do something. I worked road construction and needed to lift my foot repeatedly to push pins in the ground, I just couldn't do it.
I'm 57 years old and I lost my mother to ALS. No other known family incidents of I that I know of though. I am either exhibitin syptoms of ALS because of stress and grieving for my mother or I have it.
My neurologist told me that I needed to wait and when I have my next appointment he'd redo the EMG. He said I would either get better or worse. He said if I get worse to come back sooner and see about a referral to Rochester.
I just am going buggy waiting. I think it seems worse but I am truly trying to ignore it but it is a difficult time for me. I remember too much of my mother I think and I realized it was a good two years before she was diagnosed...the problem with that was, she died 60 days later. Some one tell me to relax, you don't have ALS...get a box of chocolate and destress...
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