Looking for some possible direction/advice

* NOT asking for answers, just advice/direction for next step *

I’m a 19-year-old male dealing with chronic, unexplained foot pain. I currently use a wheelchair about 80% of the time due to severe pain (rated 8–10/10), and use arm crutches or canes for another 10% (pain around 6–7/10). The remaining 10% of the time, I’m able to walk unassisted, though the pain remains about a 5/10. I also experience constant numbness in both my hands and feet, which is slowly worsening over time. The numbness never changes or goes away. My hands only hurt when they’re cold, but my feet are painful all the time, with cold temperatures worsening the pain further.

I’m currently under the care of a great team of specialists: my primary care provider, a rheumatologist, and a neurologist. With their help, I’ve had the following tests:

• X-rays of both feet
• Spinal X-rays
• Two EMGs (both normal)
• MRIs of both the foot & ankle
• Head MRI and full-body PET/CT
• Extensive blood work (all normal)
• Physical therapy (no improvement)

So far, the only abnormal findings have been:

* Neurological exam showing signs of a possible peripheral neuropathy; I’m scheduled for genetic testing to explore this further on June 3rd.

* Ankle MRI, which showed thinning and tearing of tendons; doctors suspect the thinning may be related to the pending neuropathy, but the tearing is unexplained.

I’m currently being fitted for AFOs to help reduce further tendon tearing and to assist with knee instability (my knees occasionally give out, though imaging hasn’t shown any abnormalities there).

I also have some weakness in my legs, though that could be due to reduced activity from wheelchair use. I think I may be slowly losing strength in my arms and hands as well, though it might just be from not being able to work out like I used to, since money’s been tight.

I’m considering asking my neurologist about testing for multiple sclerosis (MS) next, and possibly ALS if the weakness continues to progress. I also believe I’m having memory issues, which I plan to bring up at my next appointment. Are there any additional tests or types of specialists you’d recommend looking into at this point, or am I on a good path so far?