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dbltree

Distinguished member
Joined
Jan 3, 2013
Messages
217
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PALS
Diagnosis
01/2013
Country
US
State
Iowa
City
Birmingham
I hope no one is offended but this is one forum I wish I didn't need to join, but....here I am. After EMG, 2 MRI's, bloodwork, urine tests I was recently given the bad news that I have MND, most likely ALS.

I started loosing pinch, then grip strength in late Summer 2012 and slowly arm strength as well. Right ankle is weak but I can still walk but I trip easily when working in the timber where small stubs etc. cause me to end up on my face.

Only God knows how fast/slow this will progress but right now I can still do most activities although it appears that exercise is not a great idea? I have rampant muscle twitches that are worse on my right side then left right now.

I have quite a bit of muscle pain in my arm muscles especially if I use it at all and when sitting any pressure on the underside of my thigh from chair edge causes a great deal of soreness and discomfort. Any thoughts on muscle pain (since I commonly read there is no pain) would be welcome.

I also wonder if it is possible to get on disability at some point? Right now I would like to work as long as possible but that involves working in the timber and fields with farming activities so obviously that kind of work will soon be out of the question.

Thanks in advance for any thoughts or information that might help me as I go forward.
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,255
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Friend was DX
Diagnosis
03/2012
Country
US
State
MO
City
aaaa
I am sorry for your diagnosis. I have family in Waterloo, Swisher and Tripoli. I would talk to your doctor about pain, there are many different medications.

I don't know about disability.

There are other wonderful people here who will chime in to answer questions and offer love and advice.

I wish you peace.
 

Chrissylong

New member
Joined
Jan 3, 2013
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Learn about ALS
Country
US
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Ca
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Pomon
There is pain associated with ALS. My dad experienced it. I'm personally with most symptoms of
Familial ALS unfortunately, and am looking for advice & knowlege. Scared to
Look for diagnosis, but will be better knowing as can begin therapies & treatment if so.
But as to your question about pain, I'm not sure why folks say there's no pain. His was more so his shoulders, chest & feet.
I wish you all the best roads & decisions & of course a slow progression if at all.
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
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Ottawa
G'Day Dbltree,

Very sorry about your diagnosis. You've found the right place for reliable information, support and laughter. We understand just how overwhelming this new reality is for you, and maybe in some small way, we can all help you navigate it. Since I am in Canada, I cannot provide you with insight to the US disability process, but from what I've gleaned on this forum, yours is a speedier system, particularly if one is a veteran.

I too have muscle pain and I have been prescribed med icine which helps; what really has been beneficial are the series of small & simple stretches taught to me by the physical therapist at the ALS clinic I attend. You will no doubt be referred to such a clinic in the near future.; they really help you stay ahead of the disease as much as possible. In addition, my local ALS Society has been equally helpful.

There's so much to take in- but you don't have to do it all at once. Getting the financial paperwork done quickly is a good thing and provides you with more immediate peace of mind. Other than that, set your own pace and in a short while, you will see that there is a "whole lot of livin' " yet to do. You just have to decide what fun thing it is you want to do first!

Best wishes to you and looking forward to getting to know you.
 

hjlindley

Senior member
Joined
Dec 1, 2011
Messages
760
Reason
PALS
Diagnosis
10/2011
Country
US
State
VA
City
Richmond
The only pain I have is from muscle spasms. I am lucky that it can be controlled with tizanidine, I have both 2 and 4 mg tablets in the house. I try to keep the dose as low as possible. My symptoms started in my right hand in 2008. I'm still walking but it's exhausting. The frustrating thing about this condition are the number of variables in each patient. I tried very hard to concentrate on what I still can do rather than what I can no longer do. I have found this forum a lifesaver. So sorry had to join us.
Holly
 

wattif

Member
Joined
Jun 12, 2012
Messages
24
Reason
PALS
Diagnosis
09/2009
Country
US
State
Kansas
City
Wichita
I was able to get on SSDI right after the Dr. officially diagnosed me. Your dr. can help with that.
Also, I have learned that if I do stretches that a physical therapist gave me, it seems to slow the progression somewhat. Also I learned, the hard way, that if you overdo it the muscle loss seems to be faster. I was told right away not to work them too much. So if I start feeling the muscle hurting I stop.
I doubt if this works for everyone but it has helped me.
 

debra6004

Member
Joined
Nov 13, 2012
Messages
12
Reason
PALS
Diagnosis
10/2011
Country
US
State
FL
City
Spring Hill
Once you receive the diagnosis of ALS from your doctor(s), you can decide when you wish to go on disability. I was diagnosed in Oct. 2011 but I either have slow progression or some other type of motor neuron issue. I am still working but may decide to go on disability some time this year. I have a gross disturbance of gait, but none of the upper symptoms. Here's some links that will help you.

HALLEX I-3-1-51

A Professional

New Social Security Rules
 

dbltree

Distinguished member
Joined
Jan 3, 2013
Messages
217
Reason
PALS
Diagnosis
01/2013
Country
US
State
Iowa
City
Birmingham
Thank you all for your help and encouragement and thanks so much for the helpful links debra, they answer many questions!

My neurologist did say it was alright to exercise and to take ibuprofen for pain but I will try to learn more about stretching and I will keep it on the light side. I look forward to any other helpful information and in time....adding what I may learn to in turn help others.
 

KC2U2

Distinguished member
Joined
Sep 20, 2010
Messages
229
Reason
PALS
Diagnosis
09/2010
Country
US
State
LA
City
Broussard
A ALS diagnosis will get you automatic fast track approval for social security disability, that is the good news. the bad newsis that fast track means you will have to be out of work six full months before you receive any payments so consider this when deciding quitting date. also contact your local ALS Association, they will provide great info, support group, loaner equipment when needecd and ask about the ALS clinic where you can see all the specialist in one day. Sorry to have to welcome you to this club
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
So sorry you find your self here...

While doctors like to say there is no pain in ALS, many pals disagree. I think from my time here, I have seen all different levels of it. It usually seems connected to joints, tendons or muscle loss. My husband is lucky he does not suffer from any. As far as disability SS, ALS is fast tracked but that means 6 months. sounds like your job is quite physically demanding which is tough, you also can not be working when you apply so you need to plan out when you want to go on. do not wait too long--you may need it especially for medical equipment like a wheelchair.

you are correct, exercize in not good, but gentle stretching is very helpful--called range of motion. helps keep youmoving!

Also, be very careful about falls. they can be very dangerous and even deadly as you are not able to catch yourself, and trip easily. we have had members here end upwith concussions, stitches and even die from falls. my husband fell alot in the early days before he realized his limitations.

Please know that all the pals and cals here are going to be here for you, and will give you as much help as we can.
 

KJordan78

New member
Joined
Oct 20, 2012
Messages
6
Reason
CALS
Diagnosis
09/2011
Country
US
State
Arkansas
City
Crossett
This is my first post here and I also want to say I'm very sorry you have found yourself here. My Mother in law is one year into her diagnosis. Hers started with numbness in her hands and feet, then a lot of tripping and falling. She was thankfully already on disability for fybromyalgia, but I feel like this diagnosis will get disability easily also. What I don't understand is why Medicare doesn't pay for half of the things medicaid pays for?!? Because my FIL works, they "make too much $" for medicaid. This makes no sense to me. We as a family are seriously struggling and desperate for help. Our current serious issue is problems using a catheter. She no longer has control over her bowels and the cath keeps stopping up. Just today a urologist said he didn't see patients in a wheelchair. Ugh!
Please be careful with you walking and falls. We've suffered many many bumps bruises and a lot of pain. She was told pain medication was a no no with als pts, that it will only speed up the disease. What does your dr have you taking now? If anything?
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
Messages
2,397
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
I disagree that pain meds are a no no with ALS. You just have to start slowly and see what works. As your muscles deteriorate damage from strenuous work is a big risk. My husband suffered a torn rotator cuff. As far as working you can make up to $1000 a month while waiting out the six month waiting period.
 

dbltree

Distinguished member
Joined
Jan 3, 2013
Messages
217
Reason
PALS
Diagnosis
01/2013
Country
US
State
Iowa
City
Birmingham
Thanks for all the comments! My right arm feels like someone has been beating on it all day, trying to just live with it...

Anyone have any experience with cold and how it effects you? If I walk outside in 25-30 degree weather my legs instantly stiffen and my arms become rigid? I know temp changes affect MS but hadn't read that regarding ALS?
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
I am not doing well with the cold at all. Used to love winter and was an avid skier. My legs stiffen right up and when I get cold, it feels like I am frozen, through & through. For that reason, since it's gotten cold, I don't trust my cane to hold me up, with such stiff legs and icy sidewalks. Heating pad, hot water bottle and hot rice bag neck pillow help to reduce stiffness almost immediately. At this point, I am uncertain if it is the ALS, a coincidence and/or arthritis, but this stiffness is all new to me.
 

Inventor

Distinguished member
Joined
Aug 10, 2012
Messages
204
Reason
PALS
Diagnosis
12/2012
Country
FI
State
Southern Finland
City
Espoo
Cold stiffness in the legs here as well.
 
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