TamaraG
Member
- Joined
- Nov 12, 2024
- Messages
- 12
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- OR
- City
- Portland
I hope this is ok. I do not have a diagnosis. I fear I may not be able to obtain one. I do believe I have ALS. My troubles began with a poorly healing spinal fracture. It met a painful process in my neck my neurologists never seemed interested in. I have a complex migraine disorder. When the spine surgeon wanted to rule out motor neuron disease, I thought he was being thorough. Now I see the changes and I am increasingly more disabled. I have significant to me facial, neck, hand , and foot atrophy. My neuro NP has noted this. My gynecologist saw pelvic fasciculations. I had a negative EMG with a neurologist I do not trust. She told me the changes in my body were normal aging. They are not. Not even for the elderly.
I worked in healthcare until I couldn’t. I live healthy and know my body. I’m not sure how feet that walked and hiked as much as mine can atrophy like that. Same as my hands. I was a baker and massage therapist. I handled surgical instruments. Now I have trouble opening a jar.
I am now homeless. My bf kicked me out when my EMG was clean. He decided that meant I am lying. He is stuck at anger in his grief process. He can see the changes in my body and function.
I have no way to support myself. I’m in a hotel until I can find housing. I have funds for about 6 months. From what I understand, I have no recourse. All I can do is wait to decline. I do not understand why I can’t get any support. With or without a name, I’m in decline. My gait is impacted as is my speech. I have dysphagia. My lips are so weak, I dribble food and drink. I don’t feel safe in the shower unless a friend is nearby.
Thank you for reading. I have never felt more afraid. I think they told me that there is no help.
I worked in healthcare until I couldn’t. I live healthy and know my body. I’m not sure how feet that walked and hiked as much as mine can atrophy like that. Same as my hands. I was a baker and massage therapist. I handled surgical instruments. Now I have trouble opening a jar.
I am now homeless. My bf kicked me out when my EMG was clean. He decided that meant I am lying. He is stuck at anger in his grief process. He can see the changes in my body and function.
I have no way to support myself. I’m in a hotel until I can find housing. I have funds for about 6 months. From what I understand, I have no recourse. All I can do is wait to decline. I do not understand why I can’t get any support. With or without a name, I’m in decline. My gait is impacted as is my speech. I have dysphagia. My lips are so weak, I dribble food and drink. I don’t feel safe in the shower unless a friend is nearby.
Thank you for reading. I have never felt more afraid. I think they told me that there is no help.