The Romberg's Connection 2009 Survey Results

Fasciculation (muscle twitching)

Page 33. III. Associated Symptoms (page 2 of 4) cont.:
Fasciculation (muscle twitching)
1. Can it be linked to the start of progression:

Linked

Responses
(35)

% of Number responding

Yes

54%

46%

Number responding = 35 / percent responding = 24% of total respondents (143).

Page 33. III. Associated Symptoms (page 2 of 4) cont.:
Fasciculation (muscle twitching)
2. How long did it last:

Count	Responses (27)
1	?
1	10 years
1	15 years
1	19 - 27
1	6-12 months, best guess
1	a few seconds
1	about 13 years
1	almost 4-5 years
1	comes and goes, maybe last a day or a few days
1	eyelid twitching comes and goes
1	I still have it, amount of time it lasts varies in seconds.
1	It used to last just minutes.
1	mild and brief
1	not long in my case
2	not sure - it comes and goes
1	Not sure- didn't really keep track- it has just been something that happened.
1	off and on for 3 years
1	on and off
1	rarely occurs
1	since it was diagnosed at age 15
4	still going on
1	still occurs occasionally
1	unknown

Number responding = 27 / percent responding = 19% of total respondents (143).

Page 33. III. Associated Symptoms (page 2 of 4) cont.:
Fasciculation (muscle twitching)
3. Can it be linked to a stage of activity:

Count	Responses (21)
1	?
1	For me - possibly linked to beginning stages.
1	I don't know
1	I think with the time when the atrophy started.
5	no
1	none that I can think of
4	not sure
1	not that I know
1	seems to happen more when I am fatigued
1	unknown
3	yes
1	yes after the blunt trauma

Number responding = 21 / percent responding = 15% of total respondents (143).

Page 33. III. Associated Symptoms (page 2 of 4) cont.:
Fasciculation (muscle twitching)
4. Comments for Fasciculation (muscle twitching):

Responses (22)
Can't recall twitching prior to surgery in '89.
Doesn't happen all that often, maybe a few times every few weeks. Even so, it isn't always in the affected areas, or even the affected side.
eyelid twitching, came late as it reached my eye area
happens in the spur of the moment
Happens rarely, but I do feel like the deterioration is taking place while it is happening.
I also had jaw lock due to spasm of muscle in jaw. Muscle would harden like a nut - for several minutes. Sometimes back to back a number of times. Eventually, muscle would tire out and it would be painful to open mouth at all.
I did not have this before the surgery.
I do get some, but I do not know if it is associated with progression.
I get twitching around my left eye sometimes. I haven't thought about the timing previously.
I remember that it started happening to me just before I had my free-flap surgery, and I freaked out and called Boston to let the Dr. know.... he wasn't concerned, so I figured it wasn't a big deal. I thought that my nerves were dying or something!!! Every now and then it happens now and I'm like, uh oh.... here we go again, but I don't worry about it.
I've had slight muscle twitching in the affected side of my face for years. For several months now I've started to have muscle twitching throughout my body. Will be seeing a doctor about it this next month (may not be related to Rombergs).
Meds did not seem to help, only the induced coma would stop them, Ativan was helpful at times.
Mine has been with me all my life since it was diagnosed at age 15.
Neck and left shoulder feel weak and I find it hard to control the twitching, especially when concentrating or driving.
no set pattern noticed
none
not severe
Still get twitching in jaw and cheek. Haven't had the pain for about 2 yrs. Still get migraines, but not as often as before.
The fasciculation is the locking of my jaws.
The muscles twitch in the face and on my arms and legs.
very annoying
very annoying, cold weather really bothers the left side of my face

Number responding = 22 / percent responding = 15% of total respondents (143).

Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for a consultation with one's personal physician. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.

As a support group, The Romberg's Connection is unable to offer medical advice to anyone.

Throughout this survey, when we use the term "Rombergs" or "Romberg" we are referring to: "Parry Romberg", "Parry Rombergs", "Parry Romberg Syndrome" and "PRS".

This is an unscientific survey designed to gather information from those who must deal with Rombergs on a daily basis.