It is interesting that he said you don't get large fiber involvement until later in the game with hereditary neuropathy. I waited a very long time to see a neurologist, at least 15 years after the numbness started in my early 30's. By then my NCS was abnormal. My skin biopsy showed no discernible nerve fibers so it was pretty far gone.
I had no idea that all this was connected with my childhood coordination problems, as there was no access to family history.
It sounds like you have found a good neurologist. As I recall a lot of your symptoms fit with CMT.

When the myelin is damaged (CMT1) the nerve impulses are conducted more slowly than normal. If the axon itself is damaged (CMT2) the speed of nerve conduction is almost normal, but the strength of the signal is reduced. All forms of CMT are either demylinating or axonal in nature. CMT is a mult-gene disorder and so there are many different genes which cause the disorder.

CMT affects the peripheral nervous system (PNS) and therefore it results in both motor symptoms (weakness and muscle wasting) and sensory symptoms (numbness). CMT is progressive and usually slow.

He said in a few cases of hereditary sensory neuropathy, my dad didn't have large fiber involment until he was in his 60's. I have excellent balance, so that kind cancelled out the CMT Dx, but the other symptoms are there, high arches, and calf cramping. This has been a 30+ years with PN pain, so it is progressing slowly, what ever the type. Interesting there are only two families to date, that had a hereditary sensory neuropathy and had burning feet, as the main symptom, maybe there is one more family? As far as childhood coordination problems, they usually picked the fat kid before me when we were choosing teams for baseball... Part of the problem was there wasn't enough lefty mitts, but I think it was a coordination problem.

When kids come over to play at our house and are rummaging for baseball mitts the problem is too many lefty mitts!
Two of my three biological children are left handed, so we have them in all sizes.
I was reading and writing well before school started, and was left handed, but in those days they switched you if they could. Result- abysmal handwriting and a hard wired inability to tell right from left.
I did not have the burning feet until late in the game, about 47, but I did have leg pain, high arches, weak, skinny ankles, restless legs, and an odd gait all along.
I have the neuromuscular issues from the CMT, but I suspect the SFN causes it's own pain apart from the muscle pain and spasms. I would be completely non-functional without pain relief. I am slowly getting there with it and I can see the time in the near future when the pain meds won't make much difference. Stairs and ramps are my nemesis. I can barely lift my feet.

That's funny, to many lefty mitts, kind of the sign of the times... When I was in school, They really looked down on left handers, our left palm would always be either covered in granite from the pencil from ink for the pen!
I haven't found anything to subdue the burning pain, opiates, gabapentin and lyrica don't do diddly...
I had a lot of ankle problems, with multiple sprains, but they seem okay now, so it might not be related... Sorry to hear you are having so much pain.

As far as having high arches - you can have high arches, normal or flat feet. Lots of people have that who do not have CMT. So that isn't always a sign of CMT.

This is true, but my father had arches so high, it was more of a deformity, couple that with the hammer toes, and it was difficult for him to put on shoes. Also with large fiber involvement, and loss of feeling in his legs was a good indicator. I don't think he was DNA tested, but he had a Dx of CMT. I remember him explaining the findings, and telling me that people with high arches had nerve problems, I pondered this for years, as it seemed like such a weird connection, then when I finely got a chance on the Internet to look it up, it made Sence.
As far as my high arches, they are not as pronounced, and I only hav. Slight hammer toe. Actually I wish the doctor would say, "oh it is just gluten" and be done with it, and the pain would go away. I would even become a vegan if the pain would jus go away...If it is CMT, it hasn't effected my balance, or gait. My mother has burning feet, so maybe it is something she passed along. I wonder if you can inherit mutations in the genes form both sides of the family? That would mess with the poor neuros head! So I am hoping it is not CMT, just want a Dx so I know what is in store for me in the future... SFN would be bad enough, or I should say IS bad enough...
But you are right...

I know a gal who has CMT and also her brother. She is worse off. They never could figure out who they inherited it from or how else. Their mother was fine and so was their Dad. However, when their Dad got to be 80 years old he was diagnosed with Parkinson's disease. After a bit they checked further and found that he had CMT and not Parkinson's. So he was misdiagnosed. The gal and her brother had their problem solved. They now knew how they got CMT.

CMT symptoms can become evident when you are young, old, or in-between. Or they may never be that evident. People are misdiagnosed to this day. Symptoms of CMT did not come along til later in my life. But when they did, I knew what I was going to be dealing with from family history. I did not have that many noticeable symptoms at that time. No balance or gait problems then either. Symptoms vary greatly even within the same family.

As far as your balance and your gait not being affected, that can come along later. Can you stand on your tiptoes and/or your heels? Hope you find an answer soon.

Kind of feel sorry for the Doctors and researchers of hereditary neuropathy, they just can't get a handle on it... So many different symptoms, severity and time factors! I have had a lot of leg problems, bad cramping in the calf muscles and arches. Seems like enough indicators, to make a DNA test worthwhile. Since I am a cash patient, I am not having to get approval from a insurance company. With the DNA testing getting cheaper, $1,000 for the whole DNA chain, that becomes more affordable, and will be a good diagnostic tool. The companies testing one test for more are not going to stay in business. I am still thinking of just having my Rheumy order the test. The punch biopsy is going to be $500, so if that can be avoided... Though it might be good for a bench mark on the progression.
Thanks Kitt, very informative!

BTW Kitt, I cannot walk on my heals, but I can walk on my toes...Does CMT effect the Achilles tendon? My foot doctor wanted to cut both of them and make them longer, I ran from the office... (well hobbled) So, the effected areas are: Toes, arches, heels, ankles, calves, knees, hips, lower back, middle back, upper back, neck, and shoulders, elbows, wrists, and fingers. The neuropathy is effecting: feet, ankles, calves, hands, arms, shoulders, back, neck and head... Besides that I am fine.