Cramps and fascilations all the time!

Status
Not open for further replies.

jfred

New member
Joined
May 28, 2009
Messages
7
Reason
Learn about ALS
Country
US
State
delaware
City
rehoboth beach
I continue to have cramps and fascics everyday all day. This has been happening for six months now and has beaten me down emotionally and physically. The fascics are random and happen everywhere, last night even had some in my stomach, on my neck almost felt like it was right on my larynx, and my lips. Cramps are painful and very concentrated, recent cramps in neck are very alarming to me. The cramps seem to be getting worse and the fascics are always present and never leave me alone I have just adapted to them but it is extremely frustrating. I continue to be very scared and feel as if I may be in the begining stages as I have read that some als patients have started out with similar symptoms. Just had to get some things off my chest as my frustration levels are at a breaking point.

jfred
 

LaurentCH

Active member
Joined
Feb 19, 2009
Messages
45
Reason
Learn about ALS
Country
CH
State
ZH
City
Zurich
i have the same, but less cramps than you. After two clinical exams and clean EMG I have been diagnosed with "Begign Cramp and Fasciculation Syndrome". Noone knows exactly what it is but go to the forum www.aboutbfs.com. Had you done an EMG?
 

jfred

New member
Joined
May 28, 2009
Messages
7
Reason
Learn about ALS
Country
US
State
delaware
City
rehoboth beach
Had an emg in march and was clean, but things just feel as if they are getting worse. How long have you been having twitches and cramps? Do you have any joint pain? Where do you get the twitching and cramping, just curious as I feel completely isolated.

Thanks,
jfred
 

AndyDJX

Distinguished member
Joined
Mar 4, 2009
Messages
257
Country
US
State
MA
City
Boston
Jfred; there is indeed a condition called benign cramp fasciculation syndrome that matches your symptoms exactly.
 

jfred

New member
Joined
May 28, 2009
Messages
7
Reason
Learn about ALS
Country
US
State
delaware
City
rehoboth beach
Thanks Andy, it is very difficult and frustrating situation when the doctors do not have an answer. I was one who never went to the doctor ever and I am not a hypochondriac. I have just read stories of people who started out with similar symptoms as me. I experience these feeling all over my body and have also broken down in tears on numerous occassions. It all becomes very scary because I cannot stop thinking about my two young kids and my wife, and the fact that I can barely go ten minutes without something happening to my body.
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,425
Diagnosis
09/2007
Country
US
State
USA
City
Any
Jfred,
Sorry you are going through all of this, but it does sound like BFCS, or something probably very treatable, have you had blood work,mri's, cat scans, etc? A clean emg is a really good sign,and surely leads away from ALS in a big way. How was your clinical exam? Dont panic sounds like you will be here for a long while.. Try to relax, and work on getting to the bottom of what is bothering you.
 

AndyDJX

Distinguished member
Joined
Mar 4, 2009
Messages
257
Country
US
State
MA
City
Boston
It's true; the symptoms are bad enough, don't let stress and anxiety contribute to them and make it worse, especially over something that doesn't sound like ALS. Listen to hopingforacure; do a full work up with your doc to make sure your magnesium, potassium, calcium and vitamin levels are ok as well as any other tests they would like to run. If everything comes back clean, it sounds like BFCS, a painful and annoying condition, but not as serious as the conditions you are worried about. The fact that you have had a clean EMG already points far away from ALS and towards BFCS.
 

jfred

New member
Joined
May 28, 2009
Messages
7
Reason
Learn about ALS
Country
US
State
delaware
City
rehoboth beach
Thanks a lot for the information and support I really appreciate it! I have had mri's of brain and all spinal cord(all clean) multiple blood tests for lymes, arthrits etc. pretty much every blood test they could run. Anyway, thanks again and God bless.
 

chris_uk

Distinguished member
Joined
Aug 30, 2008
Messages
111
Reason
Other
Diagnosis
00/0000
Country
UK
State
CL
City
Stockton-On-Tees
hi

try not to get to down i have been there as so many have on this site, take a look at my video


YouTube- 2009 03150001

I have this all the time and i have been told its BFS, took me a long time to believe this (didnt it Wright :lol:) but i have and have moved on

Good luck

chris
 

nightwolf_mk

Distinguished member
Joined
Aug 1, 2007
Messages
107
Diagnosis
05/2012
Country
BR
State
SP
City
Gru
I have been suffering from this for almost three years now. It is difficult to deal but some things can help. Try to drink tonic water in a daily basis to the cramps.
I am sure it will help. Also I take potassium pills every day for the cramps. For fasciculations you can take 400MG to 600MG of chelated magnesium every day
and I am almost sure they will control your symptoms like it did to me. There are another supplement you can try. I don't know if I can say the name here because it could be interpreted like some kind of advertaisement so I will send you the name by a private message.

God stay with you.
 

icecreamlady

Active member
Joined
Jun 3, 2009
Messages
38
Reason
Learn about ALS
Diagnosis
06/2009
Country
US
State
Pa.
City
Beaver Falls
45 years old.. 6 month fatigue..1 year of arm weekness, I have brain fog, I started twithing all over about a month ago( only at rest).
About 3 weeks ago my voice changed, and lost gag relex.. I have had all testing except EMG and spinal tap.. I have the EMG Monday..
Have you lost your gag refelex? You just get to the point that you want a yes or no...
 
Status
Not open for further replies.
Top