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jpsteeler99

Active member
Joined
Jun 7, 2012
Messages
63
Reason
PALS
Diagnosis
06/2012
Country
US
State
NJ
City
Waldwick
I was diagnosed with ALS in June of 2012. Obviously, I was hoping the doctors were wrong but I don't think they were. My onset was in the left leg with a bit of foot drop. I then started to have a little slurred speech. My biggest problem though is spasticity in the legs. I am starting to think I am predominantly UMN with some LMN mixed in. I am assuming I do not have PLS because of what I have read. PLS doesn't have fascilations and I fascilate head to toe 24/7. The symptoms in my legs seem to be more along the lines of PLS though. My hamstring, especially the left is sometimes rock hard and I have cramps in my calves every moring while laying in bed. When I get out of bed my legs stiffen up solid and I have to stand there and wait 3-5 seconds for them to come back to normal before I can start walking. This happens when I sit for an extended amount of time as well. The cold weather makes me into a tin soldier. When I get nervous or self-consience about people watching me hobble around, it gets really bad. Almost to the point where I can't move. I tend to get nervous(self concience) when people are watching me. Getting out of an elevator when people are getting out behind me, forget it, I lock up solid. I must say I am getting better with this as time goes by though. I guess eventually I will get used to being disabled. I also have spasms in my legs when I put extra weight on one or the other. The spasms do not hurt but are annoying. My balance is shot and I shuffle around like Tim Conway(from the Carol Burnette show) I am taking Baflofen and Tizanidine but they do not seem to help with any of these symptoms. I would give anything to reduce the spasticity so I could see if weakness were an issue as well. I can't tell if I have weakness because my legs are so stiff. Any help or comments would be welcomed...Thanks.
 

Tokahfang

Moderator emeritus
Joined
Jan 31, 2010
Messages
791
Diagnosis
07/2009
Country
US
State
VA
City
Richmond
Unfortunately, ALS has all the problems of PLS with the lower motor neuron stuff thrown in. Are you using something to help you walk yet? A visible thing, even just a cane, draw some more help and respect from the folks around you.
 

jpsteeler99

Active member
Joined
Jun 7, 2012
Messages
63
Reason
PALS
Diagnosis
06/2012
Country
US
State
NJ
City
Waldwick
Yes, I have a cane but I only need it to step off curbs or steps without handrails. It does seem to help when I am carrying it. Thanks.
 

billbell52

Distinguished member
Joined
Feb 1, 2010
Messages
224
Reason
DX UMND/PLS
Diagnosis
05/2005
Country
US
State
TX
City
Garland
I have PLS since 2003 and I have fasciculations (small visible twitches). I have had them since the beginning. My calf muscles are mostly affected but I have them in my arms and hands as well. Sometimes I feel them but most times I have to look to know I have them. My arm is twitching right now. They have diminished a bit over they years but I still have them. I don't keep track any more but I had them 24/7 at the beginning. Maybe 1 a second. My Dr. runs the MDA/ALS clinic in Dallas and he did not seemed concerned and reconfirmed the PLS diagnosis. I think muscle rippling is more in line with ALS. So far all the symptoms you have are similar to my own experiences. I have bulbar PLS. It started with my speech and gradually moved down my body
 

old dog

Distinguished member
Joined
Aug 27, 2011
Messages
301
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
OR
City
Scio
As I understand the diagnostic process, (and there's a lot I don't understand) is that in PLS the EMG doesn't show lower motor neuron involvement. Apparently what may appear to be PLS at first may become ALS and, in some cases, the other way around. My diagnosis was made more quickly than that of many on this site. For the first year following diagnosis, doctors at the ALS Clinic have treated me as an ALS patient, probably because my progression during that time period was pretty rapid. Now that the rate of progression has slowed and I have not developed a breathing problem, the docs treat me more like they think my problem really is PLS.

I sure understand about spasticity practically immobilizing you when stressed. Take Beky's suggestion and try a cane if you aren't already using one. I also take tzanidine (at night) and baclofen (daytime). I seldom get cramps but do have some minor muscle twitching. If I am trying to bend over to reach something, (tying my shoes, for instance) I am likely to get cramps in the rib cage.
 

Nighthawk

Senior member
Joined
Jan 17, 2013
Messages
833
Reason
PALS
Diagnosis
12/2011
Country
US
State
Maryland
City
Anne Arundel Co
Hi,

Have you checked with your Neurologist just in case your diagnosis could be UMN-dominant ALS.
That doesn't mean you wouldn't have LMN involvement as well but, perhaps with UMN symptoms being the dominant ones in the course of your disease supposedly would make your progression a bit slower than the average PALS.

-
 

jpsteeler99

Active member
Joined
Jun 7, 2012
Messages
63
Reason
PALS
Diagnosis
06/2012
Country
US
State
NJ
City
Waldwick
Thanks for the responses. I am going with MND for now. Let the doctors figure it out later. This is too crazy to try and figure out. I read every night for hours on end and just seems I keep reading the same thing. I do have some minor breathing problems and I think there is LMN involvement but I think the UMN is way more. I can't tolerate Baclofen, I've tried it numerous times and it bangs me up pretty bad. Headaches, neck pain(I think from trying to hold my head up), drowsy, fatigued.....
 

sjaza_granny

Member
Joined
Apr 8, 2013
Messages
21
Reason
PALS
Diagnosis
11/2009
Country
US
State
Ohio
City
Upper Sandusky
I was very lucky in that I was diagnosed quite quickly. I started out with my feet and legs feeling quite heavy and I would shuffle instead of picking up my feet. I was taken to the emergency room when my feet started moving very quickly. I grabbed a light pole to stop myself and did a pole dance landing on my face. The Dr. at the ER thought I might have Parkinson's but my doctor sent me to a wonderful neurologist who pretty much knew at the beginning it was PLS. After sending me to a doctor at Ohio State it was confirmed. I was told that if I didn't develop ALS in a year and half, I probably wouldn't. It has been 3 1/2 years and I am doing fine. I can't stand very long at all, and can't walk far at all, but I do consider myself very lucky. My only real problem is that I'm not allowed to drive, so I can't take off and go visit my grandchildren.
 

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,055
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
... My only real problem is that I'm not allowed to drive, so I can't take off and go visit my grandchildren.
I'm wondering why you can't drive. If your legs are the only problem, a simple set of hand controls should put you back behind the wheel again.
 

sjaza_granny

Member
Joined
Apr 8, 2013
Messages
21
Reason
PALS
Diagnosis
11/2009
Country
US
State
Ohio
City
Upper Sandusky
I can't drive because I noticed my self going left when I was driving. The doctor decided it just wasn't worth the risk to myself and others.
 

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,055
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
Good for you for recognizing a problem.
 

sjaza_granny

Member
Joined
Apr 8, 2013
Messages
21
Reason
PALS
Diagnosis
11/2009
Country
US
State
Ohio
City
Upper Sandusky
Thanks, I'm just very thankful I get the ALS.:razz:
 

sjaza_granny

Member
Joined
Apr 8, 2013
Messages
21
Reason
PALS
Diagnosis
11/2009
Country
US
State
Ohio
City
Upper Sandusky
I meant that I am thankful I didn't get the ALS.
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,663
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
JP, you might try a collar of some sort to provide some head support
 

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,055
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
I meant that I am thankful I didn't get the ALS.
For future reference, you don't need to repost corrections, you can edit the original post. However you have a limited amount of time to do this. An hour maybe after you post it? Not sure how long the post remains available for editing. Look for the 'edit' button next to the 'reply' and 'quote' buttons underneath your post. It will disappear when you can no longer us it.
 
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