I have a neurologist who did the testing, however, it seems the cardiologist is the lead. Should I change this?
June 11
Great question! Since your primary symptoms involve inherited peripheral neuropathy, the specialist most relevant to your situation would likely be a neurologist rather than a hematologist.
Hematologists are most important for AL (light-chain) amyloidosis, where abnormal blood cells are the core issue. For inherited Show Full Answer
Great question! Since your primary symptoms involve inherited peripheral neuropathy, the specialist most relevant to your situation would likely be a neurologist rather than a hematologist.
Hematologists are most important for AL (light-chain) amyloidosis, where abnormal blood cells are the core issue. For inherited (hereditary ATTR) amyloidosis with neuropathy, the key specialists tend to be:
- Neurologist — to monitor and manage nerve-related symptoms
- Cardiologist — which you already have ✓
- Geneticist — especially relevant for inherited forms
- Amyloidosis specialist center — these offer comprehensive, coordinated care That said, every person's situation is unique, and amyloidosis can affect multiple systems. It's worth having a conversation with your cardiologist or primary care physician about whether any additional specialists should be part of your care team given your specific type and progression.
Early and coordinated care really does make a meaningful difference with amyloidosis.
June 11