Autonomic Neuropathy

[clinicalguru3]

OK....we have checked a few things.

Please tell us..how many living relatives do you have who actually have similar signs of neuropathy?

This may be important for further genetic testing...will explain after you respond to us.

All the best.

[FeatherMe]

I believe my brother has experienced neuropathy but he must be on vacation as I have been tryig to reach him since Saturday just to confirm it.

One again thanks.

[clinicalguru3]

Would it be possible for you at some point to go with your brother to your treating Neurologist?
Has your brother had an NCV (EMG) performed?

[FeatherMe]

My brother lives in CA and I live in NY! As soon as I can get in touch with him I will ask about NCTs and EMGs.

[FeatherMe]

My brother has returned and does have polyneuropathy and is on neurontin. Prior to that he stumbled and fell frequently because of foot drop. The neurontin has helped that. He doesn't know much about his condition. He was told it's age and he has to live with it. He doesn't know if sensory is greater than motor. I've asked him to try to find out more information. He hasn't seen the doctor about that in three years - I asked if it was progressive.

[clinicalguru3]

Do you think you may be able to obtain his EMG (NCV) results?
When he was told it's "just age" ...were his doctors aware that he almost certainly has a hereditary neuropathy?
It is often the case, especially with dispersed families that it takes a while for the doctors to realize that it is a familial problem.

Let me know when you think you'll be able to get more info from your brother.

[FeatherMe]

This was my brother's reply---------

Talked to dr office today. Said it would cost $15 to get it. Question I have is: so what if it's hereditary- there's nothing we can do about it nor can our kids,

Cheers!!

I wrote back I would pay for the papers and mailing but I haven't heard from him. I tried to explain that earlier detection might have prevented the falls and the horrible job done to my feet and ankles, etc. I'm sorry about this.

[FeatherMe]

A change of heart!! My brother wrote just a few minutes ago:

They're on the way - mailed this am.

No need for money.... just wondering if it was worth it. According to my guy's nurse, it might pay to check in every couple years because of new discoveries.

It can't help us, and if it's hereditary, it can only worry our children....unless somebody can come up with a good answer.

Obviously I have a mild case..caused by who knows what. It definitely wasn't solved by my partial discectomy, but my major leg pain was.

Let me know what you learn.

Cheers!!!

[FeatherMe]

Finally! I'm sorry it has taken so long. I had foot surgery on Monday and didn't leave the hospital until Thursday only to go to a rehab hospital fighting to get to a computer!
I was amazed at how similar my brother's test resu;ts are to mine. Here they are:
Motor Nerves
Nerve Site Onset Lat. Amp. Velocity

R Peroneal EDB O-P Seg Name
Ankle 5.44 2.91 B Fib-Ankle 43.2
B Fib 12.84 2.78 Poplt-B Fib 46.4
Poplt 15.00 2.61
L Peroneal EDB O-P Seg Name
Ankle 5.34 5.66 B Fib-Ankle 37.9
B-Fib 13.78 4.95 Pop 41.8
Poplt 16.17 4.80
R PostTib AbdHal O-P
Ankle 5.58 8.84 Knee-Ankle 37.9
Knee 15.61 7.86
L PostTib AbdHal O-P
Ankle 5.44 7.77 Knee-Ankle 36.8
Knee 7.08
Sensory Nerves
Nerve Site Peak Lat Amp
R S Peron Ankle NR
L S Peron Ankle NR
R Sural Lat Mal 3.3 2.25
L Sural Lat Mal 3.52 2.08

EMG Report
Mod Prolonged Mildly Poly
L/R AntTibialis L/R AntTibialis
L/R ExtHallLong L/R ExtHallLong
L/R Peroneus Long L/R Peroneus Long

Clinical Interpretation
Mild-moderate chronic peripheral neuropathy with axonal>demyelinating features

I hope this proves useful. Thanks again.

[clinicalguru3]

Well thanks for making the effort!

There seems to be little doubt that the cause of your neuropathy is hereditary. In the event that you and your family wish to investigate the matter further (to allow genetic counseling for later generations, to help advance research in the area etc) then the best thing to do is to meet with an expert in the sub-specialty of neuropathy or neurogenetics. They may be able to arrange special genetic tests to pinpoint the problem, although it is unlikely this will directly affect your personal treatment protocol.

In terms of the sweating:-

Have you been given anticholinergic medications...oxybutyinin is often used, amytriptylline is another example which is sometimes used (it is also used for pain, and mood problems).

If there are certain parts of the body that specifically sweat more than others, then more focal treatments can be tried.
Some dermatologists use a technique called iontophoresis which works for some people.

Which of these have been tried?
Which areas of the body are most problematic?

[FeatherMe]

Have you been given anticholinergic medications...oxybutyinin is often used, amytriptylline is another example which is sometimes used (it is also used for pain, and mood problems). Tricyclics make me hyper. I have not been given any of the others.
If there are certain parts of the body that specifically sweat more than others, then more focal treatments can be tried.
Some dermatologists use a technique called iontophoresis which works for some people. Haven't heard of this.

Which of these have been tried?
Which areas of the body are most problematic? The sweats basically involve my trunk.

An interesting thing has happened since my surgery - I haven't had any sweating! I had nerve blocks, I had some necrosis removed from my foot, and I had morphine, and am still on oxycontin and oxycodone. I don't know if there is a relationship or not.

[FeatherMe]

I think the sweaing has to do with activity, not that I do anything aerobic but after spending most of my time in bed and then moving for rehab and now I'm home, I'm back with sweating spells again. I'm in my power chair and do a lot of bending and moving of my upper body. I don't know - I guess nothng makes sense. It's frustrating.

Father Me

[clinicalguru3]

Well the nerve blocks may have temporarily stopped the sweating..this makes sense.

Which parts of the body are affected the most / bother you the most?

[FeatherMe]

The parts that bother me the most are under the breasts, the groin, and the middle of my back. My arms and occasionally the neck area get beyond the limit. I am still on oxycontin and oxycodone and I think that has lowered the sweating amount and frequency.

[clinicalguru3]

Some of these areas may be very amenable to treatment with BOTOX. Perhaps you should consider visiting a neurologist with experience in botox injections for this purpose...is this an option for you?