They spent about 2 hours on my EMG/NCS at Hopkins, after keeping me under a heat lamp for half an hour- I was freezing. When he found the first ulnar nerve entrapment he went to the other arm and found another. They did do the genetic test for HNPP because of that, but it was negative, so CMT type 2 stood. He seemed to feel there was no point in further testing, and never suggested surgery.
I wondered too if surgery would help, but it flares up and goes away so maybe it isn't like the type where they can release the nerve. Since it is progressive and the nerves are deteriorating it is a different situation. My son was in constant pain before his surgery, with numbness, and did get immediate relief.
I still think height is an aggravating factor in all length dependent neuropathies, and CMT is highly idiosyncratic- everyone seems to be affected differently. It is like the pain component- many people with CMT do not have pain and retain feeling in their feet and legs, but if I have severe SFN with no small nerve fibers I am going to have a lot of pain, whether the cause is CMT, diabetes or something else.

Well the fact they found nerves on the EMG means that they found some affected large nerves (right? or am i simplifying this?).

Also, thanks for sharing this. I'm going to lock the doctor in during my EMG until I know we explored everything.

PS: Good word there, "idiosyncratic."

Yes, I have large fiber neuropathy (LFN) as well as SFN. Hereditary neuropathy causes both to develop- the first causing the sensory loss, the second the muscular atrophy. This is a little simplistic as the whole effect is greater than the sum of its parts.
Small, unmyelinated fibers do not show up on an EMG, that is why the skin biopsy is so important. You can have very severe SFN with a perfect EMG.
If you have pinched nerves they should show up on the EMG.

Yes, CMT is unique to the individual (ideosyncratic). However, that does not mean it affects tall people differently. Many types of it and none that I have found mentions anything about it affecting tall people like that. It's the type and subtype of it. Symptoms of CMT vary greatly even within the same family.

Looking at the general presentation of CMT, I'm starting to doubt how genetic this is.

Height may cause you to be susceptible to PN and it could cause other genetic disorders, but I think the total number of environmental causes for PN outweighs the inherited ones.

Not to say either is worse or more worthy of attention. They all suck. So...

CMT is an "inherited" syndrome. It is genetic and progressive no matter what you do. There are over 70 types identified so far with no end in site. Most CMTers have the more common types. Height is not in the picture for CMT. It is an equal opportunity "inherited" syndrome.

Bringing this thread back to life. Saw a doctor at Jefferson University but am still in the dark / lacking a diagnosis.

The tingling has gotten better (YAY) and is limited to the fingertips and toes.

However, I'm starting to develop more pain around the joints (knees and elbows especially). My knee is starting to give out and I'm noticing visual deformities (either swelling or muscle atrophy).

I've also developed a twitch in my right eye (three weeks now). And am starting to get twitches in my left foot.

I'm worried and could use some .
If you have any ideas, let me know.

Hi

I have similar symptoms, height, it is difficult being tall. I think we know little about these complex diseases and how to treat them. The only thing you can do is support your bodies recovery with gentle exercise and the right diet. Seafood and green veg is great. I do tai chi for arthritis by dr lam. Possibly some b vitamins. A good chinese dr could help maybe. Your bodies a complex orgasm it needs nourishment, complex diseases dont often have miracle pill cures.

I'll give you bunches of hugs !

I am so sorry you are going through this. I have severe SFN that started strong in May 2013 after chemo ended and I was pre-diabetic also.

Yep they all suck big time. But we are here for you and each other.

Take care and keep us posted on how you are doing and what you find out.

And one BIG group hug

Debi from Georgia

Thank you SOOOOO much Debi!