Sensitivity to pressure/Ruth/HNPP

[Guest guest]

>>>>>>>Ruth pressure palsies is related to HNPP. You may not be experiencing

pressure palsies, but rather the uncomfortable feelings related to lack of

muscles in the area where you are crossing your legs. Lack of muscles makes

skin to skin, bone to bone contact and can hurt. Pressure palsies is different.

Causing a numbness in the area. Hope this helps, ~>Becky M.

http://www.hnpp.org/symptoms.htm

hnpp.org _______________________________________

HNPP Symptoms

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HNPP causes episodes of numbness, tingling and/or weakness in response to nerve

injury from pressure, stretching or repetitive use. Things that cause these

symptoms usually would not affect a normal individual. When injured, the nerves

demyelinate or lose their protective covering. This demyelination is what causes

the episodes of numbness and weakness in the injured area. The numbness and

weakness is referred to as a ‘pressure palsy'. In time, the nerves recover, or

partially recover and remyelinate.

These episodes of numbness and weakness can be as brief as a few minutes, but

may last several days or even several months. Two to three months seems to be

the most common duration of a " long " pressure palsy, but 6-12 months is not

unheard of. Numbness may be as mild as the individual noticing that an area or

limb does not have quite the same feeling as surrounding areas or the other

side. Or the numbness can be so severe as to feel like the area or limb has been

shot full of Novocain. Weakness also can vary between slight and so severe that

the individual is, depending on the location of the pressure palsy, unable to

move a particular muscle group or the entire limb. A pressure palsy in the hand

can result in not being able to hold a pen, much less write; not being able to

hold a bar of soap; not able to use a knife to cut, to put on socks, button

buttons, do zippers or any number of fine motor activities. A pressure palsy in

the arm may result in the arm being totally useless. Another whole arm problem

can involve not being able to use the arm if it is way form the body, or if the

elbow is not tucked into one's side. This makes activities like eating, reaching

and washing hair impossible, or nearly so. A leg palsy can make walking, driving

or climbing stair nearly or completely impossible. Dragging a leg during a palsy

is not uncommon.

The numbness and weakness may gradually go away or it may remain severe for

quite some time and then rapidly get better. And sometimes the numbness and

weakness may only partially improve, meaning there is permanent nerve damage.

There is no way to tell at the beginning of a pressure palsy whether there will

be noticeable permanent damage or not. Wiht a pressure palsy, it really is " only

time will tell " . The amount of time the nerve is compressed seems to play a role

in the severity of symptoms.

HNPP can vary greatly in severity and cause very different symptoms even within

the same family. It can also cause different symptoms within the same

individual! Symptoms can come and go. In approximately one third of people who

are diagnosed with HNPP no other family members are recognized to have the

disorder. HNPP is also a great imitator of common disorders acquired later in

life such as carpal tunnel syndrome. It's no wonder that HNPP can be hard to

diagnose and the majority of individuals do not even know they have it.

Examples of activities that cause symptoms of numbness, tingling and weakness

are:

crossing legs at the knee

leaning on elbows

sitting with legs crossed, tailor style

kneeling

gardening

carrying anything by the handle (purse, suitcase, grocery bag,)

using scissors

knitting

working with hand power tools

holding the telephone in one position too long

tying shoes too tight or tight shoe straps

painting too long (holding brush or roller)

walking too long (more than an hour)- advanced HNPP

lifting weights

using a mouse at the computer

typing

There are other symptoms which people with HNPP are reporting (Note: This does

NOT mean that everyone with HNPP will develop these symptoms). Many of these are

typical symptoms of anyone who has a generalized neuropathy.

Symptoms reported:

Back Pain

Pain at the sites of entrapment

Leg/ankle foot swelling

Fatigue

Muscle cramps

Paresthesias (abnormal sensations)

Muscle weakness

As people with HNPP meet on the Internet, they tend to compare other symptoms

and problems which they are experiencing. These problems range from headaches to

digestion to bladder problems, etc. It is not yet known if these problems are

indeed related to HNPP. More medical studies need to be done. This is not to say

that discussions should not continue. But all problems that a person with HNPP

is experiencing, should be reported to the attending neurologist and the

neurologist involved in any studies in which the person is involved.

Last updated: 2/01

[Guest guest]

Thanks Becky,

Interesting. I've actually had episodes of temporarily losing

function (not being able to hold a pen, not being able to cut food

with a knife). My episodes generally are very brief - lasting only a

minute or two. Then function will return, although the affected

region feels weaker for a brief period of time after the episode.

So many of these symtpons overlap. I have had numbness and tingling

for as long as I can remember. (It is also getting worse, increasing

in frequncy, duration and amplitude). Anyway, the inabily to cross

my legs is new. Seems ever since I hit 40 (two years ago) the

progression has accelerated.

For those who are new to the list, I am diagnosed with Type 2,

unknown subtype. My extended family is part of a genetic research

project at Duke by Dr. Vance and the chromosone region they

are exploring does not map to other known Type 2 regions.

One other comment about HNPP. There is a statement that the nerves

can remylenate (sp?) after an episode. This would be something

research could look into. If doctors could figure out that is

happening, how to get nerves that have lost myeling to regain it, it

could be a possible treatment for the demylenating forms of CMT and

also HNPP.

Ruth Warren

----------------------------------------------------------------

> >>>>>>>Ruth pressure palsies is related to HNPP. You may not be

experiencing pressure palsies, but rather the uncomfortable feelings

related to lack of muscles in the area where you are crossing your

legs. Lack of muscles makes skin to skin, bone to bone contact and

can hurt. Pressure palsies is different. Causing a numbness in the

area. Hope this helps, ~>Becky M.

>

> http://www.hnpp.org/symptoms.htm

> hnpp.org _______________________________________

>

> HNPP Symptoms

> Back to home page

>

> HNPP causes episodes of numbness, tingling and/or weakness in

response to nerve injury from pressure, stretching or repetitive use.

Things that cause these symptoms usually would not affect a normal

individual. When injured, the nerves demyelinate or lose their

protective covering. This demyelination is what causes the episodes

of numbness and weakness in the injured area. The numbness and

weakness is referred to as a `pressure palsy'. In time, the nerves

recover, or partially recover and remyelinate.

>

>

>

> These episodes of numbness and weakness can be as brief as a few

minutes, but may last several days or even several months. Two to

three months seems to be the most common duration of a " long "

pressure palsy, but 6-12 months is not unheard of. Numbness may be as

mild as the individual noticing that an area or limb does not have

quite the same feeling as surrounding areas or the other side. Or the

numbness can be so severe as to feel like the area or limb has been

shot full of Novocain. Weakness also can vary between slight and so

severe that the individual is, depending on the location of the

pressure palsy, unable to move a particular muscle group or the

entire limb. A pressure palsy in the hand can result in not being

able to hold a pen, much less write; not being able to hold a bar of

soap; not able to use a knife to cut, to put on socks, button

buttons, do zippers or any number of fine motor activities. A

pressure palsy in the arm may result in the arm being totally

useless. Another whole arm problem can involve not being able to use

the arm if it is way form the body, or if the elbow is not tucked

into one's side. This makes activities like eating, reaching and

washing hair impossible, or nearly so. A leg palsy can make walking,

driving or climbing stair nearly or completely impossible. Dragging a

leg during a palsy is not uncommon.

>

> The numbness and weakness may gradually go away or it may remain

severe for quite some time and then rapidly get better. And sometimes

the numbness and weakness may only partially improve, meaning there

is permanent nerve damage. There is no way to tell at the beginning

of a pressure palsy whether there will be noticeable permanent damage

or not. Wiht a pressure palsy, it really is " only time will tell " .

The amount of time the nerve is compressed seems to play a role in

the severity of symptoms.

>

>

>

> HNPP can vary greatly in severity and cause very different symptoms

even within the same family. It can also cause different symptoms

within the same individual! Symptoms can come and go. In

approximately one third of people who are diagnosed with HNPP no

other family members are recognized to have the disorder. HNPP is

also a great imitator of common disorders acquired later in life such

as carpal tunnel syndrome. It's no wonder that HNPP can be hard to

diagnose and the majority of individuals do not even know they have

it.

>

>

>

> Examples of activities that cause symptoms of numbness, tingling

and weakness are:

> crossing legs at the knee

> leaning on elbows

> sitting with legs crossed, tailor style

> kneeling

> gardening

> carrying anything by the handle (purse, suitcase, grocery bag,)

> using scissors

> knitting

> working with hand power tools

> holding the telephone in one position too long

> tying shoes too tight or tight shoe straps

> painting too long (holding brush or roller)

> walking too long (more than an hour)- advanced HNPP

> lifting weights

> using a mouse at the computer

> typing

>

>

> There are other symptoms which people with HNPP are reporting

(Note: This does NOT mean that everyone with HNPP will develop these

symptoms). Many of these are typical symptoms of anyone who has a

generalized neuropathy.

>

> Symptoms reported:

> Back Pain

> Pain at the sites of entrapment

> Leg/ankle foot swelling

> Fatigue

> Muscle cramps

> Paresthesias (abnormal sensations)

> Muscle weakness

>

> As people with HNPP meet on the Internet, they tend to compare

other symptoms and problems which they are experiencing. These

problems range from headaches to digestion to bladder problems, etc.

It is not yet known if these problems are indeed related to HNPP.

More medical studies need to be done. This is not to say that

discussions should not continue. But all problems that a person with

HNPP is experiencing, should be reported to the attending neurologist

and the neurologist involved in any studies in which the person is

involved.

>

> Last updated: 2/01

>

>

>

>