Re: Question for Paolo

[Guest guest]

What

> do you recommend for your patients who have strange and uncomfortable

nerve

> sensations that keep them awake, and limit their activity during the day?

FEW PEOPLE IN ITALY HAVE NEUROPATHIC PAIN DUE TO CMT ALONE AND NOT TO

SCIATALGIA DUE TO LUMBAR STENOSIS, SPONDYLOLISTESIS OR A NERVE ROOT

COMPRESSION IN THE LUMBAR SPINE.

AS I WROTE LAST WEEK, IN MY PATIENTS NEUROPATHIC PAIN DUE ONLY TO CMT HAS

ALWAYS BEEN SPORADIC, THAT IS LIMITED TO SHORT PERIODS.

SOME PEOPLE HAD A NEUROMA CONSEQUENT TO A SURAL NERVE BIOPSY THEY HAD HAD IN

THE PAST: ONE WAS REFERRED TO THE SURGEON TO REMOVE IT, OTHERS SAID THAT

PAIN WAS ONLY ONCE A MONTH ON AVERAGE AND TOOK NOTHING OR JUST A MINOR

ANALGESIC FOR FEW DAYS.

OTHER PEOPLE LIKE ME HAVE SHOOTING PAIN (ELECTRIC SHOCKS) ONLY WHEN THERE

ARE SKIN ABRASIONS, OEDEMA, BLISTERS, FORUNCULUS, ON THEIR FEET.

I THINK THAT THESE CONDITIONS TRIGGER THE UNDERLINING INSTABILITY OF THE

SENSORY FIBERS.

REMOVING THE CAUSES RELIEVES THE PAIN. NIMESULIDE IS GENERALLY EFFECTIVE

UNTIL THE CAUSES ARE REMOVED.

SCIATALGIA DUE TO LUMBAR STENOSIS, SPONDYLOLISTESIS OR A NERVE ROOT

COMPRESSION IN THE LUMBAR SPINE ARE FREQUENT ALSO IN THE GENERAL POPULATION

(BUT PROBABLY LESS THAN IN CMT) AND CAN BENEFIT FROM DRUGS (NON-STEROID

ANTI-FLOGISTICS), SURGERY, ANESTHETIC BLOCKS, CORSETS, PHYSIOTHERAPY. SINCE

THIS PAIN IS DUE TO ORTHOPAEDIC CAUSES, I DO NOT CONSIDER IT AS

" NEUROPATHIC " .

CRAMPS ARE FREQUENT IN CMT PEOPLE WHO REACT TO THE INSTABILITY CAUSED BY THE

DISTAL ALTERATIONS BY A STRONG CONTRACTION OF THEIR LEG AND THIGH MUSCLES.

THEY GENERALLY DISAPPEAR AFTER A PROPER COMPREHENSIVE REHABILITATION

MANAGEMENT IS COMPLETED.

HAVE A GOOD SUNDAY.

Paolo Vinci, M.D.

Specialist in Physical Medicine and Rehabilitation

Professor, School for Physiotherapists, University of Rome " La Sapienza "

Chief, Department of Rehabilitation of CMT Disease and other Neuromuscular

Disorders - Specialized Rehabilitation Hospital " L. Spolverini " - ASL RM

H - via Chigi 64 - 00040 Ariccia (Rome) - Italy

Member of the European Charcot-Marie-Tooth Consortium

President of the Italian Charcot-Marie-Tooth Association (AICMT)

>

> Thanks,

> Nita

>

>

>

[Guest guest]

-----Original Message-----

From: Paolo Vinci

OTHER PEOPLE LIKE ME HAVE SHOOTING PAIN (ELECTRIC SHOCKS) ONLY WHEN THERE

ARE SKIN ABRASIONS, OEDEMA, BLISTERS, FORUNCULUS, ON THEIR FEET.

I THINK THAT THESE CONDITIONS TRIGGER THE UNDERLINING INSTABILITY OF THE

SENSORY FIBERS.

REMOVING THE CAUSES RELIEVES THE PAIN.

>>>>>>>>Hi Paolo,, I have these shocks in my hands and forearms. Its due to

nerve damage. Theres nothing to remove that is causing them. I have had them

down my legs, its not just the feet. And I'm not the only person on this list

to have them in other areas than the feet. And we all have different types of

CMT, so its not a " type " thing. And carpol tunnel has been ruled out, its CMT

all the way. <<<<<<<<<<<

SCIATALGIA DUE TO LUMBAR STENOSIS, SPONDYLOLISTESIS OR A NERVE ROOT

COMPRESSION IN THE LUMBAR SPINE ARE FREQUENT ALSO IN THE GENERAL POPULATION

(BUT PROBABLY LESS THAN IN CMT)

>>>>But Scoliosis is more prominent in CMT. And that can cause the above

conditions. <<<<<

CRAMPS ARE FREQUENT IN CMT PEOPLE WHO REACT TO THE INSTABILITY CAUSED BY THE

DISTAL ALTERATIONS BY A STRONG CONTRACTION OF THEIR LEG AND THIGH MUSCLES.

THEY GENERALLY DISAPPEAR AFTER A PROPER COMPREHENSIVE REHABILITATION

MANAGEMENT IS COMPLETED.

>>>>>>>>Cramps can be caused by contracture of muscles and tendons. And Over

use. And in some cases, surgery will not help contracture, or stretching

exercises, it depends on the degree of contracture, where its at etc. And for

Over use, rest is the only therapy to help. I take Baclofen for spasms.

~>Becky M.