Status
Not open for further replies.

Jules45

Active member
Joined
Dec 23, 2008
Messages
64
Country
US
State
Texas
City
Dallas
All, please help me if you can.

I've had and EMG on my legs/neck that was clean, MRI, Babinski, Hoffman etc. all turned out clean. 2 weeks ago, my Neurologist plus his colleague who is an ALS specialist looked at all my tests and concluded that I don't have Bulbar and/or ALS.

However, I've been experiencing cramping in my feet, calves, hands, and forearms. The cramping gets worse when I'm exerting the muscles.

In the past I've been a gym rat, etc. but haven't worked out recently due to fear/perception.

Can anyone please let me know if they have heard/experienced first symptoms of ALS being cramping with no weakness, or loss of mobility?

Thanks and God Bless.
 

KANSASTOM

Distinguished member
Joined
Jul 2, 2008
Messages
165
Reason
Learn about ALS
Country
US
State
ks
City
wichita
Cramoing is the first sign of about 1000 different things, relax.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Jules, first, if your neurologist plus an ALS specialist tell you that you don't have ALS, that's a pretty good clue that you don't have it. If it were me, I'd stop right there in my research, give thanks to my Higher Power, unbookmark this forum and get on with life.

Second, I have never heard of cramps as the first symptom of ALS.

So now you have the opinions of two experts and one complete ignoramous on the subject. :) Plus Kansastom and ktmi and Robert.

Take care.
 

Jules45

Active member
Joined
Dec 23, 2008
Messages
64
Country
US
State
Texas
City
Dallas
Thank you both for your responses.

God bless.
 

ktmj

Distinguished member
Joined
Oct 17, 2008
Messages
421
Country
US
State
Dixie
City
Redneck
I am echoing what everyone else has said - cramping could be a zillion things. If there is nothing else, no worries. Go do something safe like jumping out of a perfectly good airplane with a parachute.
 

Jules45

Active member
Joined
Dec 23, 2008
Messages
64
Country
US
State
Texas
City
Dallas
P.S. I'm also thinking that I might have that Benign Fasiculation Cramping Syndrome. The original reason I went into the Neurologist was because I was having fasics on my thighs, triceps, etc.
 

planningguy

Senior member
Joined
Jun 5, 2008
Messages
556
Country
US
State
Wyoming
City
Sheridan
Jules,

I would echo the others in saying you can relax. I think BFS is a good option to explore, as is a vitamin deficiency if you havn't looked at that already.

Robert
 

DeeMichelle

Distinguished member
Joined
Mar 20, 2008
Messages
118
Reason
Lost a loved one
Country
UK
State
Hertfordshire
City
St Albans
I'm really glad the neuros say you don't have ALS. I hope you can get the bottom of what is bothering you, but also take time celebrate most people on this site really would rejoice if they had your news.
All the best
Dee
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I would take the word of your doctors and rejoice. Enjoy your life to the fullest as you never know what the future might bring. None of us know what the future might bring so enjoy each day and don't worry about the future.
I did have cramping for over a year before ALS symptoms started happening, but cramping does not indicate a thing! Try not to worry.
 

Jules45

Active member
Joined
Dec 23, 2008
Messages
64
Country
US
State
Texas
City
Dallas
Joe, did you have cramping on just one side or both sides? I'm still having fasics in the thighs and neck, and cramping in the bottom (pinky section) of my palms, forearms, and in my arches.

Is the cramping caused by atrophy? If yes, I would think that would show up in the EMG they did on my legs.

Thanks and God bless.
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I had Charlie Horse type of cramping in my legs - not fasics. There was no atrophy at this time and the cramps were not caused by atrophy.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
I too had charlie horse type cramps in my legs, just horrible ones, preceding anything else by several months, if not a year. Most were when I was at rest, some lesser type cramping in my feet when I was walking aisle working on the plane. There was no atrophy, no twitching at all. I do not know if there was a connection or not. There are hundreds of more common reasons for cramps, ALS as the reason should be at the very bottom of the list, after all other causes have been investigated. Seriously, you will be doing yourself and anyone that cares for you a huge disservice if you let yourself get caught up with the improbable. LISTEN TO YOUR DOCTORS! Good luck to you.
 

Jules45

Active member
Joined
Dec 23, 2008
Messages
64
Country
US
State
Texas
City
Dallas
Rose;

You must be happy that your Steelers are in the SuperBowl again! I'm a huge Packer fan so this year is tough for me.

You mention that you had cramps for up to a year. Did you have an EMG during that period? If so, did it show anything?

God Bless and enjoy the SB!
 

lydia

Senior member
Joined
Jan 25, 2007
Messages
677
Country
US
State
ny
City
buffalo
Jules,

I have been suffering from widespread and frequent cramping for almost a year now. Twitches for two years this month. I had an EMG about 6 months ago on left side only and it was fine.
Benign Fasciculation Syndrome or Fasciculation Cramp Syndrome as a diagnosed do fit some of my symptoms. As does low B12. If you can exercise, go for it!

Lydia
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Hi Jules,

YES! I'm thrilled they're in the super bowl. I actually like GB ~ like the whole story behind the team with its history.

To answer your question, no I did not have an EMG of my legs during that period, In fact I'd never even heard of an EMG. Also, it seemed to have little relevance to other problems when I started to feel something was wrong. I do not know if it is related as I am considered to be bulbar onset, although a little atypical in that it was my voice that was affected first, rather than speech itself.

Try to put this to rest if you can, time will tell, as will future testing, if you have something like this, but you'll waste valuable time and energy worrying about it. If something does come of it down the road, at least you can look back and know you didn't use up your energy on what you couldn't change. Also, you might miss out on some sort of treatable condition if you try to steer your doctors in this direction. The more you read of possible symptoms, and what others have written about what they've felt, the more it will taint your perception of what you yourself know about your own case.

good luck :)
 
Status
Not open for further replies.
Top