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Charcot-Marie-Tooth Disease Survey Results
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Diagnosis
CMT Symptom Information
Skin Problems
Deformity of Hands and/or Feet
Mobility and Dexterity
Mobility Aids
Specific Medical Problems:
Eyes
Hearing
Heart
Breathing
Immunity
Speech
Kidney
Bladder
Stomach
Bowel
Back
Facial Weakness
Swallowing
Pain
Depression
Extreme Stress
Other Medical Problems
Allergies
Pregnancy
Course and Treatment
Other Aids and Assistive Devices
Lifestyle and Activities
Feedback
Links
| CMT SURVEY RESULTS DISCLAIMER
****Please note that these results represent all of the surveys that I have received and entered to date. All available Survey results have been added to the data base.****
These preliminary results are compiled from the receipt of 345 Charcot-Marie-Tooth Disease Surveys comprising all types of CMT. Each question refers to people who have been definitely diagnosed with Charcot Marie Tooth Disease and each person respresented in the figures has CMT. These results do not in any way suggest that any individual will or will not have any or all of the symptoms mentioned.
The occurrence of some of the added diagnoses in the general non-CMT population must be taken into account when analyzing these findings. In some cases, the frequency of occurrence does not deviate from the occurrence in the general population, but in others, there is a marked deviation from the norm. Further research will be necessary, to determine if the occurrence of the added diagnoses, is valid information for those of us with CMT.
The percentages that are mentioned for each type of CMT, Type 1, 2 or Unknown type, are derived from the number of surveys received for that type, divided by the total number of surveys in the data base to date (345). The percentages listed for each individual question are derived from the number of individuals answering 'yes' or 'no' to each individual question, divided by the number of surveys received for that type of CMT.
Also please note that not all survey questions are included here, as some need more detail than a numerical data base can give them and I have been unable to compile those results.
The author does not make any claims as to the validity of this information. The information has been compiled from the CMT questionnaires, with only the input of the CMTer. There has been no information received from any of the medical professionals involved with the individual CMT patients.
People reading this information should consult with their personal physician or other medical professional for medical advice. This information in no way respresents or is meant to replace medical advice.
I Have Read The Above Disclaimer
and Accept The Limitations of the Statistics
Which Appear in the Following Pages
Please Click Above to Go To The Results
|
Diagnosis of CMT
| TYPE UNKNOWN |
TYPE 1 |
TYPE 2 |
Percentage of Each CMT Type in Surveys Received |
35.27% |
46.43% |
18.30% |
CMTers who have had at least one EMG |
89.66% |
85.11% |
96.00% |
CMTers who have had a Muscle or Nerve Biopsy |
10.34% |
25.53% |
28.00% |
CMTers who have had DNA Testing |
3.45% |
14.89% |
16.00% |
CMTers who's Nerve Conduction Velocity (NCV) was slow on EMG |
48.28% |
51.06% |
60.00% |
CMTers who's Nerve Conduction Velocity (NCV) was absent on EMG |
10.34% |
19.15% |
8.00% |
CMTers who had a nerve conduction block on EMG |
3.45% |
12.77% |
12.00% |
CMTers indicating their EMG was VERY painful? |
41.38% |
46.81% |
64.00% |
CMTers who were misdiagnosed |
37.93% |
61.70% |
56.00% |
Average age of onset of symptoms |
14 |
13 |
21 |
Average age of CMTers completing survey |
52 |
44 |
44 |
Average number of years that CMTers have had symptoms |
36 |
31 |
23 |
CMTers with a family history of CMT |
68.97% |
76.60% |
80.00% |
|
31.03% |
25.53% |
60.00% |
|
20.69% |
55.32% |
28.00% |
| CMTers who have arm reflexes: |
55.17% |
36.17% |
64.00% |
CMTers who have leg reflexes: |
24.14% |
31.91% |
32.00% |
CMTers who can stand on their tiptoes |
24.14% |
27.66% |
16.00% |
CMTers who can stand on their heels |
13.79% |
6.38% |
8.00% |
Average age CMTers first started to walk (as a baby) |
14 months |
15 months |
11 months |
CMT Symptom Information
Top
|
TYPE UNKNOWN |
TYPE 1 |
TYPE 2 |
Percentage of Each CMT Type in Surveys Received |
35.27% |
46.43% |
18.30% |
Complaints of Numbness |
79.31% |
82.98% |
72.00% |
a)in fingers
| 13.79% |
12.77% |
12.00% |
b)in hands |
24.14% |
44.68% |
20.00% |
c)in forearms |
3.45% |
6.38% |
0.00% |
d)in upper arms |
0.00% |
0.00% |
0.00% |
e)in toes |
6.90% |
8.51% |
12.00% |
e)in feet |
34.48% |
61.70% |
68.00% |
f)in ankles |
17.24% |
10.64% |
20.00% |
g)in lower legs |
27.59% |
23.40% |
27.59% |
h)in thighs |
3.45% |
4.26% |
32.00% |
-Complaints of Tingling |
72.41% |
70.21% |
60.00% |
a)in fingers |
13.79% |
6.38% |
16.00% |
b)in hands |
20.69% |
34.04% |
20.00% |
c)in forearms |
0.00% |
14.89% |
12.00% |
d)in upper arms |
0.00% |
2.13% |
0.00% |
e)in toes |
3.45% |
2.13% |
0.00% |
e)in feet |
31.03% |
29.79% |
32.00% |
f)in ankles |
6.90% |
2.13% |
24.00% |
g)in lower legs |
27.59% |
25.53% |
24.00% |
h)in thighs |
0.00% |
2.13% |
12.00% |
Complaints of Weakness |
96.55% |
97.87% |
100.00% |
a)in fingers |
10.34% |
2.13% |
4.00% |
b)in hands |
41.38% |
27.66% |
48.00% |
c)in forearms |
17.24% |
8.51% |
28.00% |
d)in upper arms |
6.90% |
2.13% |
16.00% |
e)in toes |
6.90% |
0.00% |
12.00% |
e)in feet |
13.79% |
25.53% |
60.00% |
f)in ankles |
13.79% |
12.77% |
72.00% |
g)in lower legs |
48.28% |
23.40% |
52.00% |
h)in thighs |
13.79% |
10.64% |
44.00% |
Complaints of Muscle Cramping |
72.41% |
78.72% |
76.00% |
a)in fingers |
3.45% |
2.13% |
0.00% |
b)in hands |
13.79% |
21.28% |
16.00% |
c)in forearms |
6.90% |
14.89% |
8.00% |
d)in upper arms |
0.00% |
6.38% |
4.00% |
e)in toes |
0.00% |
0.00% |
0.00% |
e)in feet |
10.34% |
17.02% |
48.00% |
f)in ankles |
0.00% |
4.26% |
40.00% |
g)in lower legs |
55.17% |
74.47% |
56.00% |
h)in thighs |
17.24% |
14.89% |
40.00% |
i)in torso |
20.69% |
6.38% |
8.00% |
Complaints of easily sprained ankles |
68.97% |
80.85% |
76.00% |
Complaints of Tripping over feet |
89.66% |
87.23% |
92.00% |
How often do CMTers fall? |
|
0.00% |
3.61% |
4.00% |
|
20.69% |
16.84% |
20.00% |
- 2=Occasional 3 to 4 x/year
|
27.59% |
26.98% |
24.00% |
|
24.14% |
38.10% |
16.00% |
|
13.79% |
9.70% |
24.00% |
|
3.45% |
6.00% |
20.00% |
Occurrence of foot ulcers |
3.45% |
8.51% |
4.00% |
Occurrence of callouses |
68.97% |
72.34% |
72.00% |
- a)Require Professional removal of callouses
|
3.45% |
27.59% |
12.00% |
- b)Remove callouses by self
|
37.93% |
40.43% |
20.00% |
Skin Problems
Top
|
TYPE UNKNOWN |
TYPE 1 |
TYPE 2 |
Percentage of Each CMT Type in Surveys Received |
35.27% |
46.43% |
18.30% |
a)rashes |
20.69% |
17.02% |
40.00% |
b)sores |
3.45% |
4.26% |
12.00% |
c)poor or slow healing |
27.59% |
25.53% |
44.00% |
d)pin point red spots on skin that are very itchy |
20.69% |
19.15% |
16.00% |
e)an increase in the number of freckles that are very itchy |
0.00% |
2.13% |
16.00% |
f)Occasional appearance of a sore that appears as a blister and then breaks, and turns into an ulcer, which takes a long time to heal |
3.45% |
2.13% |
12.00% |
g)unexplained bruising |
27.59% |
38.30% |
36.00% |
h)blue,mottled skin (in feet and/or hands) |
31.03% |
36.17% |
40.00% |
Top
Deformity of Hands and/or Feet
|
TYPE UNKNOWN |
TYPE 1 |
TYPE 2 |
Percentage of Each CMT Type in Surveys Received |
35.27% |
46.43% |
18.30% |
|
have high arches |
86.21% |
85.11% |
80.00% |
have flat feet |
13.79% |
14.89% |
20.00% |
have hammer toes |
62.07% |
65.96% |
68.00% |
have clawed feet |
24.14% |
42.55% |
44.00% |
have weak wrists |
62.07% |
78.72% |
80.00% |
|
have clawed hands |
20.69% |
21.28% |
16.00% |
have weak thumbs |
79.31% |
72.34% |
64.00% |
% who are able to straighten legs completely while sitting
|
86.21% |
65.96% |
84.00% |
|
82.76% |
63.83% |
84.00% |
% who lose balance more easily when eyes closed and standing with feet together |
55.17% |
51.06% |
80.00% |
have a reduced sense of touch, heat, pain, etc |
65.52% |
85.11% |
68.00% |
have difficulty knowing where feet/hands are without looking at them |
27.59% |
51.06% |
64.00% |
Mobility and Dexterity
Top
|
TYPE UNKNOWN |
TYPE 1 |
TYPE 2 |
-Percentage of Each CMT Type in Surveys Received |
35.27% |
46.43% |
18.30% |
have difficulty walking |
93.62% |
96.55% |
100% |
have difficulty with balance |
95.74% |
96.55% |
100% |
have had problems with Achilles Tendon (Heel Cord) |
37.93% |
57.45% |
52.00% |
have difficulty writing |
82.76% |
74.47% |
64.00% |
who have neat handwriting |
10.34% |
29.79% |
32.00% |
frequently drop items |
72.41% |
78.72% |
84.00% |
feel Hands worse than Feet |
6.90% |
10.64% |
8.00% |
feel Feet worse than hands |
65.52% |
74.47% |
72.00% |
feel Hands and Feet equally affected |
24.14% |
14.89% |
20.00% |
| CMTers who have sensation of Asymmetry: |
- feel left side worse than right
|
44.83% |
42.55% |
52.00% |
- feel right side worse than left
|
24.14% |
31.91% |
32.00% |
|
31.03% |
25.53% |
20.00% |
Mobility Aids
Top
| feel their shoes are too heavy for their feet |
48.28% |
38.30% |
52.00% |
| wear orthotics |
34.48% |
34.04% |
48.00% |
| wear Ankle Foot Orthoses:(AFO's) |
48.28% |
34.04% |
56.00% |
| use wrist splints |
13.79% |
17.02% |
12.00% |
| use a Cane |
37.93% |
37.23% |
40.00% |
| use crutches for mobility |
13.79% |
17.02% |
4.00% |
| use a walker |
17.24% |
17.02% |
12.00% |
| use a Wheelchair Part Time |
0.00% |
32.50% |
8.33% |
| use a Wheelchair Full Time |
3.45% |
4.26% |
4.00% |
| use a scooter |
3.45% |
4.26% |
4.00% |
Specific Medical Problems: Other Body System Disorders
Top
|
TYPE UNKNOWN |
TYPE 1 |
TYPE 2 |
Percentage of Each CMT Type in Surveys Received |
35.27% |
46.43% |
18.30% |
Eyesight problems |
93.10% |
72.34% |
92.00% |
- Far Sighted? eg.:see things better in the Distance
|
24.00% |
35.45% |
31.58% |
- Near Sighted eg.:see things better Close to you
|
52.00% |
31.74% |
63.16% |
- Diagnosed with Optic Atrophy?
|
8.00% |
16.67% |
0.00% |
|
12.00% |
10.85% |
10.53% |
|
93.10% |
72.34% |
92.00% |
Problems with Speech eg:slurring? |
34.48% |
27.66% |
12.00% |
Hearing problems |
44.83% |
40.43% |
36.00% |
- Hear things More Clearly than most people
|
10.34% |
8.51% |
24.00% |
|
34.48% |
34.04% |
64.00% |
- don�t hear as well as other people
|
51.72% |
48.94% |
48.00% |
Heart problems |
17.24% |
12.77% |
16.00% |
|
10.34% |
23.40% |
44.00% |
- Pulse Rate Less than 100 beats per minute
|
44.83% |
25.96% |
52.00% |
- pulse rate more than 100 beats per minute
|
3.45% |
7.66% |
8.00% |
Breathing problems |
41.38% |
38.30% |
32.00% |
Immunity |
|
20.69% |
14.89% |
20.00% |
- Longer recovery period than normal from colds or flu
|
17.24% |
23.40% |
32.00% |
Kidney problems |
20.69% |
12.77% |
12.00% |
Bladder problems |
20.69% |
27.66% |
28.00% |
Bowel problems |
48.28% |
42.55% |
40.00% |
Stomach problems |
62.07% |
38.30% |
28.00% |
Scoliosis
or significant Back Pain |
51.72% |
61.70% |
80.00% |
Facial Weakness |
6.90% |
19.15% |
16.00% |
Swallowing problems |
24.14% |
23.40% |
28.00% |
PAIN
Top
|
TYPE UNKNOWN |
TYPE 1 |
TYPE 2 |
Percentage of Each CMT Type in Surveys Received |
35.27% |
46.43% |
18.30% |
Complain of Pain |
75.86% |
76.60% |
92.00% |
Description of Pain:
|
27.59% |
23.40% |
40.00% |
|
31.03% |
27.66% |
16.00% |
- sharp electric like jolts
|
27.59% |
40.43% |
28.00% |
|
55.17% |
55.32% |
76.00% |
|
24.14% |
21.28% |
40.00% |
|
6.90% |
6.38% |
16.00% |
|
10.34% |
14.89% |
20.00% |
|
6.90% |
6.38% |
0.00% |
|
20.69% |
14.89% |
24.00% |
|
Pressure Palsies |
3.45% |
8.51% |
0.00% |
|
Depression |
58.62% |
44.68% |
40.00% |
|
| 36.67% |
21.28% |
40.00% |
Symptoms Worsen with Extreme Stress |
65.52% |
63.83% |
56.00% |
Medical Information: Other Problems
Top
|
TYPE UNKNOWN |
TYPE 1 |
TYPE 2 |
Percentage of Each CMT Type in Surveys Received |
35.27% |
46.43% |
18.30% |
| Complain of Fatigue? |
86.21% |
87.23% |
100.00% |
| legs get tired after exercise and feel like "jello"? |
51.72% |
51.06% |
64.00% |
| Difficulty Sleeping? |
41.38% |
63.83% |
64.00% |
| Have many airborn, skin and drug allergies |
48.28% |
42.55% |
36.00% |
| Have had a major problem with a general anesthetic or local anesthetic |
20.69% |
19.15% |
12.00% |
| Remember things more clearly than most people |
6.90% |
19.15% |
20.00% |
| Forget things easily? |
41.38% |
31.91% |
8.00% |
Course and Treatment
Top
| Progression has been slow and even with a steady decline |
75.86% |
70.21% |
52.00% |
| Progression has been intermittent with sudden deterioration over a few months, followed by a plateau before another sudden deterioration |
24.14% |
27.66% |
48.00% |
| Pregnancy |
- % of Surveys from Females
|
58.62% |
63.83% |
52.00% |
- Females completing survey who had a major progression in CMT, during and/or after Pregnancy
|
5.88% |
26.67% |
15.38% |
Other Aids and Assistive DevicesTop
|
TYPE UNKNOWN |
TYPE 1 |
TYPE 2 |
Percentage of Each CMT Type in Surveys Received |
35.27% |
46.43% |
18.30% |
| use a bath chair |
24.14% |
29.79% |
12.00% |
| have tub or shower bar |
34.48% |
23.40% |
40.00% |
| have a non-slip tub or shower floor finish |
48.28% |
42.55% |
64.00% |
| use a computer for most tasks |
68.97% |
61.70% |
76.00% |
Lifestyle and Activities Top
| CMTers who Drive a car |
79.31% |
65.96% |
88.00% |
| use Hand Controls |
10.34% |
6.38% |
4.00% |
Estimated Overall Degree of Disability
- 0=no aids, working, nuisance disease
|
0.00% |
7.00% |
0.00% |
- 1=may use AFO's, minor difficulties, balance ok
|
24.10% |
42.30% |
16.00% |
- 2=working, difficulty with balance, activity level reduced, having some difficulty
|
31.00% |
17.10% |
48.00% |
- 3=use aids, cane , difficulty with balance and walking, not working, needs help with life activities
|
27.60% |
20.37% |
24.00% |
- 4=using walker, and/or wheelchair part time, on disability, needs more help
|
3.80% |
10.50% |
8.00% |
- 5=in wheelchair full time or scooter, needs help with Activities of Daily Living
|
3.40% |
6.00% |
4.00% |
| Smoke cigarettes |
24.14% |
25.53% |
28.00% |
| Drink alcohol |
31.03% |
27.66% |
4.00% |
| have been involved in any 12-Step program |
6.90% |
2.13% |
0.00% |
| have Financial problems because of CMT |
19.23% |
27.50% |
29.17% |
Top
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"Charcot-Marie-Tooth Disease - Survey and
Information"
was created and is maintained by
Dorothy B. Gosling (Retired R.N.)
� Copyright 1997-2005 All rights reserved
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 Webmaster Email: D.B. Gosling
Changes last made on:Saturday January 8, 2005 8:11:25 AM
|