Hello everyone my name is Jeff. I'm in the process of being diagnosed - process as in waiting to meet with ALS specialist (Feb 2022!)
This is my story...
- W/M 57yr
- summer 2020: noticed muscles cramping. Thought it was age related so reduced weight training (which wasn't extensive anyway), reduced exercise
- fall 2020: wife noticed my arms were twitching
- late fall 2020: trouble gripping things w/ right hand. Given that I've been doing computer work for 30+ years thought it was carpal tunnel
- spring 2021: finally vaccinated visit my GP. Cramps most likely electrolytes and hand issue most likely ulnar nerve given numbness in pinky+ring finger
- late-spring 2021: slight numbness in right foot when walking the dogs - enough to affect my gait
- summer 2021: follow up w/ GP. "Not what your thinking (ALS)... however to be safe -> neurologist"
- late summer 2021: Neurologist. "Not what your thinking (ALS)... most likely ulnar nerve and pinched nerve in back. No noticeable muscle loss". Ordered full spinal MRI.
- 2 wks later: Insurance denies MRI. Wants EMG first.
- 2 more wks later: EMG conducted
- 1 week later: Full spinal MRI while wearing mask (covid). This was over an hour in MRI machine w/mask on. had to escape at 45 minutes - not going back in with mask on because it is unbearable...finished MRI
- 1 more week later: debrief with Neurologist. MRI is clean, EMG not so clean (showed two abnormalities). Even with her mask on the eyes gave it away - sad. Starting referral to Duke ALS clinic because it may take months to get in. Ordered blood work, urine and if all clean then spinal tap.
- fall 2021: blood clean, urine clean, spinal tap clean. Interestingly, this was communicated via the health portal. No call. "will discuss at next visit in 2wks".
- The diagnosis right now is clinically possible motor neuron disease
That brings us to today. Will meet with neurologist in a week to see about next steps. I also requested a PT referral so I can build a PT baseline with the Duke ALS clinic staff. Emotionally -like most others- this has been a rollercoaster. Now I'm just kind of numb.
To plan ahead we have met with an estate attorney and will meet with a financial planner. I'm still working but not sure for how long.
Q: Given that I don't meet with the ALS specialist until early 2022 what can I take to slow the progression? supplements vs rx?
Q: My disability and life insurance is through work - given annual benefits renewal have others run into issues adjusting their coverage? coverage getting dropped?
regards,
jeff
This is my story...
- W/M 57yr
- summer 2020: noticed muscles cramping. Thought it was age related so reduced weight training (which wasn't extensive anyway), reduced exercise
- fall 2020: wife noticed my arms were twitching
- late fall 2020: trouble gripping things w/ right hand. Given that I've been doing computer work for 30+ years thought it was carpal tunnel
- spring 2021: finally vaccinated visit my GP. Cramps most likely electrolytes and hand issue most likely ulnar nerve given numbness in pinky+ring finger
- late-spring 2021: slight numbness in right foot when walking the dogs - enough to affect my gait
- summer 2021: follow up w/ GP. "Not what your thinking (ALS)... however to be safe -> neurologist"
- late summer 2021: Neurologist. "Not what your thinking (ALS)... most likely ulnar nerve and pinched nerve in back. No noticeable muscle loss". Ordered full spinal MRI.
- 2 wks later: Insurance denies MRI. Wants EMG first.
- 2 more wks later: EMG conducted
- 1 week later: Full spinal MRI while wearing mask (covid). This was over an hour in MRI machine w/mask on. had to escape at 45 minutes - not going back in with mask on because it is unbearable...finished MRI
- 1 more week later: debrief with Neurologist. MRI is clean, EMG not so clean (showed two abnormalities). Even with her mask on the eyes gave it away - sad. Starting referral to Duke ALS clinic because it may take months to get in. Ordered blood work, urine and if all clean then spinal tap.
- fall 2021: blood clean, urine clean, spinal tap clean. Interestingly, this was communicated via the health portal. No call. "will discuss at next visit in 2wks".
- The diagnosis right now is clinically possible motor neuron disease
That brings us to today. Will meet with neurologist in a week to see about next steps. I also requested a PT referral so I can build a PT baseline with the Duke ALS clinic staff. Emotionally -like most others- this has been a rollercoaster. Now I'm just kind of numb.
To plan ahead we have met with an estate attorney and will meet with a financial planner. I'm still working but not sure for how long.
Q: Given that I don't meet with the ALS specialist until early 2022 what can I take to slow the progression? supplements vs rx?
Q: My disability and life insurance is through work - given annual benefits renewal have others run into issues adjusting their coverage? coverage getting dropped?
regards,
jeff