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DiscussionSmall Fiber Neuropathy discouraged
Neuropathy | Last Active: Apr 13, 2023 | Replies (124)Comment receiving replies
Replies to "Thanks for your response. I can work with the information I get from this group!! I..."
I want to believe the majority of doctors are good and do want to partner with us. I do wish we didn’t have to work so hard to advocate for ourselves sometimes. I do believe neuropathy has caused my foot/toe problems, and I was very disappointed my (previous) neurologist didn’t understand I wanted professional help with my gait and step so I could maintain or improve my ability to walk while living with neuropathy. This doctor made me feel that life is about “Survival of the Fittest” and that as a person doomed already with PN, medical care and resources shouldn’t be wasted on me! This group helped tremendously with ideas and inexpensive Amazon products to help with my feet and toes. I also found a good Podiatrist on my own to help understand how I’m fighting to stay active and to help me. Obviously I have a new Neurologist as well who understands we’re a “team” working together. Then my PCP told me my extraordinary hair loss and constant headache was just unfortunate with neuropathy, the stress associated with it, and hormones/age at then 55yrs. She added I shouldn’t even be concerned because I had a full head of thick hair and I have nothing to worry about! I insisted on having Iron tested with the standard bloodwork that visit. Very low Iron, anemia. That we drilled down to find other non-neuropathy issue. In this case. A simple Iron vitamin and focusing on that part of diet. Headaches are gone, and my hair is back to its thick unruly mess, and I’m not clogging my bathroom sink and shower drains. I’m sorry we have to fight as hard as we do. Many many parts of this neuropathy is what it is, and doctors can’t change it, but we know our bodies, and if we have ideas, we need to make sure they consider them. And for coping and practical experience, ideas, and tools to live with, we’ve got this great forum!