Axonal Neuropathy/CMT

My hubby had his appointment with the Neurologist yesterday and the new diagnosis is "some type of Axonal Neuropathy" and it is genetic not autoimmune. Although this is not what we wanted to hear, it makes sense. Apparently with Axonal Neuropathy, the entire nerve is damaged so there is not a chance for them to regenerate. After doing some investigating myself, I believe he has a rare type of Charcot Marie Tooth Syndrome called CMT3. It is a recessive genetic defect that affects the Axonal Nerves and causes the breakdown of the foot. The symptoms and his high protein numbers fit. Unfortunately, they can only treat the symptoms as there are no treatments (as there are for CIDP). The Neuro gave us the paperwork for an electric scooter, so we will be looking into that. Hubby is going in for surgery Oct. 10th to remove the tip bone of the 3rd toe due to the Osteomylitis. I know someone asked why we are not at a Wound Care Center. We originally were at the "best top rated" in the county, but my hubby almost lost his foot due to the pompus and incompetent doctor. We contacted 3 other Wound Care Centers, but they would not take him until he finished up with treatment at original place which was not going to happen. We found a great Podiatrist who is working closely with us and is willing to tell us when it gets to a point where Brian's condition gets beyond his scope of treatment.

It's clear that Lisa and Brian have been diligently exploring the options to find the best approaches for treating Brian's neuropathy and foot injuries. Therefore, they probably know that Ben's Friends has a Charcot Marie Tooth Syndrome support group.
For CIDP patients, the issue of axonal damage is also important. If demyelination is not adequately controlled by treatment, secondary axonal damage can occur. As noted in Lisa's message, axonal damage can't be corrected by treatment. One reason why some CIDP patients respond better to medications than do other patients can be the degree of axonal damage.
Best wishes for Lisa and Brian,