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KathyE123

New member
Joined
Jul 30, 2007
Messages
5
Reason
PALS
Country
US
State
Indiana
City
Bloomington
I am really desperately needing help and feel I have no where else to turn.I tried to get my social security disability but I was denied all the way thru the hearing level.Now I am waiting on the appeals council to deny me,I also have startd a new application.I have a very hard time walking and if I am on my feet more than 5 minuts the pain in my back,legs,hips is so excruciating I just want to die.I was fired from my job of 13 yrs while on medical leave so General Electric wouldn`t have to pay me my long term disabiity.I am just about at the end of my rope.I have been progressively getting worse since I became disabled in Jan of 2004.Nobody seems to be able to help me,I have been going to a free clinic as I no longer have insurance and am destitute.I am losing my home and I just feel lost. My left arm is wasting away and my left thigh is sunken in.I have diabetic peripheral neuropathy and they are saying it is the cause of the wasting.Has anyone else experienced anything like this?Thank you for any response
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Welcome to the forum Kathy

I'm so sorry to hear what you are going through.
How many times have you applied for social security disability? It took me 3 times before I got mine and I had to hire a lawyer who was paid by the social security.

I hope someone on the forum can give you some more direction and help.

God Bless
Capt AL
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
Hi With SS you must be very prepared You need a note from you ALS or neuro specialist All ythe test you been thru and the results and a DX or they will not give you SS I was given it right away no problems Try reapplying with the the things I mentioned and you should be OK And if that doesnt work hire a lawyer Good luck Pat
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Hi Kathy -

I know this may sound crazy, but have you considered calling or writing your Senator and/or Congressman? Sometimes they (well, one of their staff) will get directly involved in cases affecting their constituents, and there's nothing like a phone call from a politician's office to get employers and government agencies more agreeable to resolving a case in favor of the individual.

Good luck,

Liz
 

jojoj

Member
Joined
Jul 21, 2007
Messages
23
Reason
PALS
Country
US
State
md
City
baltimore
kathy...can you post all your symptoms and how long it took for them to develop, etc. we may be able to point in some direction at least.
 

KathyE123

New member
Joined
Jul 30, 2007
Messages
5
Reason
PALS
Country
US
State
Indiana
City
Bloomington
MtPockets said:
I'm so sorry to hear what you are going through.
How many times have you applied for social security disability? It took me 3 times before I got mine and I had to hire a lawyer who was paid by the social security.

I hope someone on the forum can give you some more direction and help.

God Bless
Capt AL

Thank you so much for the welcome! Yes I was denied 3x then the hearing and the judge denied me there too. I do have a lawyer that used to work for social security and now he is working on the other end. Well now my application is going to the appeals council and if they deny it which they do 75% of the time then it will go to court,the big problem I have is it takes 30 mos to get the appeals councils decision,I have already been waiting for 3 and a half yrs.

God Bless you too

Kathy
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
KathyE123 said:
I am really desperately needing help and feel I have no where else to turn.I tried to get my social security disability but I was denied all the way thru the hearing level.Now I am waiting on the appeals council to deny me,I also have startd a new application.I have a very hard time walking and if I am on my feet more than 5 minuts the pain in my back,legs,hips is so excruciating I just want to die.I was fired from my job of 13 yrs while on medical leave so General Electric wouldn`t have to pay me my long term disabiity.I am just about at the end of my rope.I have been progressively getting worse since I became disabled in Jan of 2004.Nobody seems to be able to help me,I have been going to a free clinic as I no longer have insurance and am destitute.I am losing my home and I just feel lost. My left arm is wasting away and my left thigh is sunken in.I have diabetic peripheral neuropathy and they are saying it is the cause of the wasting.Has anyone else experienced anything like this?Thank you for any response

Hi, Kathy! I am so sorry to hear that you are having a hard time trying to get your disability. What city, and state do you live in? When my son was diagnosed with als, it was March 29, 2006, he took care of everything right then and there. His social worker helped him with all of his paper work, and he started getting his disability checks right away. He had no problems at all. I cannot understand why they are doing this. It's not right. Good luck to you, and check with your drs. and social worker!

xoxoxo,
Irma
 

KathyE123

New member
Joined
Jul 30, 2007
Messages
5
Reason
PALS
Country
US
State
Indiana
City
Bloomington
patricia1 said:
Hi With SS you must be very prepared You need a note from you ALS or neuro specialist All ythe test you been thru and the results and a DX or they will not give you SS I was given it right away no problems Try reapplying with the the things I mentioned and you should be OK And if that doesnt work hire a lawyer Good luck Pat


Thanks for the response! I do have a lawyer,my problem is the Dr`s here don`t like to fill out paperwork,this is why I lost my job because none of the Dr`s I seen would fill out paperwork for the GE disability center.They just told me they don`t fill out any forms.

Good Luck back atcha

Kathy
 

KathyE123

New member
Joined
Jul 30, 2007
Messages
5
Reason
PALS
Country
US
State
Indiana
City
Bloomington
liz said:
Hi Kathy -

I know this may sound crazy, but have you considered calling or writing your Senator and/or Congressman? Sometimes they (well, one of their staff) will get directly involved in cases affecting their constituents, and there's nothing like a phone call from a politician's office to get employers and government agencies more agreeable to resolving a case in favor of the individual.

Good luck,

Liz


Nope doesn`t sound crazy at all,I did write letters to all my senators,congressmen and one even went to the president.I got a reply from our senior senators office they sent my letter to them and an inquiry as to what was going on. The senators office got back with me stating I needed to start another app while this one was being appealed and that they were going to keep up on it.

Thanks
Kathy
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Kathy- I am so sorry this is happening to you! I hope you have some friends or family that will give you moral support as you fight for your rights. Have you searched for a forum for diabetic peripheral neuropathy? If you can find a forum for that condition you might find people who got disability for your specific condition. Stick around here, too. We'll help as much as we can! Cindy
 

KathyE123

New member
Joined
Jul 30, 2007
Messages
5
Reason
PALS
Country
US
State
Indiana
City
Bloomington
jojoj said:
kathy...can you post all your symptoms and how long it took for them to develop, etc. we may be able to point in some direction at least.


I feel like a big baby bothering you with my problems. My muscles in my left arm and left thigh have been wasting away for about a yr now and the bone pain is terrible. I have had cubital tunnel surgery and carpal tunnel surgery in both my arms.At night my legs and feet burn like they are in scalding hot water with nothing to relieve it. My back pain has been with me quite some time though it was just to the point of unbearable when I went out on leave Jan 2004. I had a procedure performed called radio frequency on both sides of my spine with the Dr almost guaranteeing me 6 mos without pain. Well guess what? It did not work it went the other way and made my pain worse and constant.I am not sure what I have and don`t think the Dr`s around here know either.All I know is I am disabled.I am diabetic and some of my symptoms probably account for that.

Thanks for the help
Kathy
 

jojoj

Member
Joined
Jul 21, 2007
Messages
23
Reason
PALS
Country
US
State
md
City
baltimore
kathy, I am not diagnosed...

but from all my research, I don't believe that ALS gives you sensory symptoms of burning...probably another metabolic or neurologic problem if you are having these problems.
 
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