Ok, here it goes. Sorry it's so long, but this is what the agent gave me after I shared you post.
1. What exactly was your spine surgery, and at what level or levels?
2. What symptoms was the surgery intended to treat: the sciatica, the foot numbness, weakness, spinal stenosis, or something else?
3. Did the sciatic pain improve after surgery? Did anything else change afterward?
4. Is the numbness now in both feet equally, or did it start in one foot and spread to the other?
5. Exactly where is the numbness: toes, soles, heels, tops of feet, ankles, or higher up the legs?
6. Is it only numbness, or do you also have burning, electric pain, pins and needles, cold sensations, hypersensitivity, or a feeling of walking on cushions or rocks?
7. Does standing or walking make the numbness worse, and does sitting, bending forward, or lying down make it better?
8. Do you have any weakness, foot drop, trouble climbing stairs, difficulty standing on your heels or toes, or problems moving individual toes?
9. Is your balance worse in the dark or when you close your eyes? That can suggest loss of large-fiber proprioception.
10. What exactly did the EMG/NCS show? Were the sural and superficial peroneal sensory responses normal or reduced? Did it show radiculopathy, axonal neuropathy, demyelination, or was it completely normal?
11. Have you had a skin punch biopsy for small-fiber neuropathy? If not, was it ever discussed?
12. Have you had autonomic symptoms such as abnormal sweating, dizziness when standing, bowel changes, urinary problems unrelated to the spine, or abnormal heart-rate responses?
13. What blood testing has actually been done, especially B12 with methylmalonic acid, HbA1c/fasting glucose or glucose-tolerance testing, serum immunofixation/SPEP, free light chains, thyroid, folate, copper, B6 level, kidney and liver function?
14. When you say genetic testing, which genes or panel were tested? Was RFC1 repeat-expansion testing specifically included?
15. Do you have diabetes or prediabetes, kidney disease, autoimmune disease, cancer treatment history, significant alcohol exposure, or long-term use of supplements containing vitamin B6?
16. Any history of bilateral carpal tunnel syndrome, unexplained weight loss, heart disease, autonomic problems, or family members with neuropathy?
17. Has the numbness progressed steadily over three years, or does it come and go in episodes?
18. Has anyone examined vibration sense, joint-position sense, pinprick, temperature sensation and reflexes in a detailed neuromuscular examination?
19. Has anyone considered that you might have two separate problems, such as lumbar disease plus an unrelated peripheral neuropathy?
20. Have you been evaluated at a dedicated neuromuscular or peripheral-neuropathy clinic, rather than only by a general neurologist or spine specialist?
If she answers those, particularly #1, #2, #5, #7, #10 and #13, we could probably narrow the possibilities considerably.
@pauldandurand I thank you for your time in identifying questions that may help the direction of the neuropathy and care needed. I’ll do my best to get answers and will consult with the Neurologist who had ordered the testing I alluded to in my original message. Again thank you,
Suzanne Mangione (Sue)