Jenksie3
New member
- Joined
- Nov 9, 2022
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- MA
Hello all. I want to start with a thank you for your time and willingness to educate so many people about ALS. I’d love some advice as I continue to navigate the arduous neurology workup.
The Cliffnote version. 45 yo F.
3/21 dropping curling iron. Negative workup. Inc brain/c&t spine MRI. Stays stable but decreased grip/dexterity persists. 1/22 atrophy to dominant shoulder and deltoid noted by self, pcp, neuro. Negative shoulder MRI. 3/22 lose ability to control over hand ball throwing, underhand bowling. 6/22 increase muscle wasting to R shoulder/deltoid. EMG/NCS to right side. Unremarkable. Start PT. 9/22 PT/pcp/neuro concerned increase wasting to right neck/traps/pec/deltoid. All over fasciculations, muscle cramping, stiffness in my legs and back. Hoarse. Repeat brain/c spine mri. Unchanged. ENT treats for silent reflux. EMG/NCS done by neurologist to left side unremarkable. Noted hyporeflexive but with new significant hypermobility to R>L shoulder girdles. Bilateral shoulder blade winging. Right Arm requires support on arm rests or pillows etc. Strength 5/5 left, 4/5 dominant right. Neuro is baffled. Muscle wasting continues. Her best guess for now is cramp fasciculation syndrome unrelated to the atrophy and hypermobility and slow strength loss. (A combo of diagnosed which seem odd to me.) Referred to the neuromuscular department of bigger hospital downtown and is assuming something might declare itself good or bad between now and my appointment in January. Is this possibly ALS? What should I be prepared to ask about or for at the Neuromuscular clinic? And any ideas what to expect differently in a work up? I tried to keep it brief and think I included the most important stuff. I welcome feedback and questions.
Thanks in advance. Jenksie3
The Cliffnote version. 45 yo F.
3/21 dropping curling iron. Negative workup. Inc brain/c&t spine MRI. Stays stable but decreased grip/dexterity persists. 1/22 atrophy to dominant shoulder and deltoid noted by self, pcp, neuro. Negative shoulder MRI. 3/22 lose ability to control over hand ball throwing, underhand bowling. 6/22 increase muscle wasting to R shoulder/deltoid. EMG/NCS to right side. Unremarkable. Start PT. 9/22 PT/pcp/neuro concerned increase wasting to right neck/traps/pec/deltoid. All over fasciculations, muscle cramping, stiffness in my legs and back. Hoarse. Repeat brain/c spine mri. Unchanged. ENT treats for silent reflux. EMG/NCS done by neurologist to left side unremarkable. Noted hyporeflexive but with new significant hypermobility to R>L shoulder girdles. Bilateral shoulder blade winging. Right Arm requires support on arm rests or pillows etc. Strength 5/5 left, 4/5 dominant right. Neuro is baffled. Muscle wasting continues. Her best guess for now is cramp fasciculation syndrome unrelated to the atrophy and hypermobility and slow strength loss. (A combo of diagnosed which seem odd to me.) Referred to the neuromuscular department of bigger hospital downtown and is assuming something might declare itself good or bad between now and my appointment in January. Is this possibly ALS? What should I be prepared to ask about or for at the Neuromuscular clinic? And any ideas what to expect differently in a work up? I tried to keep it brief and think I included the most important stuff. I welcome feedback and questions.
Thanks in advance. Jenksie3