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Bill58

New member
Joined
Sep 5, 2012
Messages
4
Reason
PALS
Diagnosis
8/2012
Country
US
State
TX
City
Richardson
This is my first post.

I guess I am ready to join your club.

I am a 54 year old male. My neurologist suspects I have ALS but he does not want to make a premature diagnosis. Some test results indicated I might benefit from IVIG infusions, so I have started with that.

I used up all my paid time off days starting with the day after the neurologist mentioned ALS during my first visit back in August. I really wasn't expecting to hear such sobering news.

I work for a company with good benefits, so today I filed the forms for Short Term Disability. My wife works, and I have a son who is married and in grad school so fortunately my financial obligations are minimized.

My doc is making arrangements for a second opinion.

What is considered an 'official' diagnosis of ALS? The doc entered ICD-9 codes "335.20" and "356.9" on my disability request form, so I am thinking it is somewhat official.
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,569
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
Truly sorry for your diagnosis Bill. I am not familiar with US diagnostic codes, but I did check on line. Sadly, it appears to me to be a firm diagnosis.

I am certain, like all of us, your head is spinning. My "shock fog" lasted several weeks. I'm here to tell you it does lift; there is life after diagnosis- and plenty of it. I have learned so much on this site- but moreover, I have made new friends. The ALS & CALS here are special people indeed: generous, inspiring, gracious, honest and caring.

All the best to you Bill, in the days ahead.
 

CathyP

Active member
Joined
Feb 29, 2012
Messages
91
Reason
PALS
Diagnosis
12/2011
Country
US
State
Kentucky
City
Small Town in Western KY
Don't give up on the IVIG infusions yet since you just started that. My local neuro sent me to Vanderbilt in Nashville, TN for a second opinion as he was reluctant to say for sure I had ALS. Vandy confirmed my ALS diagnoses.
I looked up your codes...the 335.20 is Motor Neurone Disease....ALS is a motor neurone disease...the 356.9 is unspecified.
Since you are not working make sure and sign up for Social Security Disability. It is very easy to complete paperwork. Your 6 months waiting period will start with the first day you no longer worked. Your Medicare will also start after the 6 months waiting period.
Find out about your local ALS clinic....great way to be included in clinicial trials if you are interested in that.
Sign up at your local ALS Association and your local MDA/ALS Association.
I know it is very overwhelming at first and I waited on signing up for things when I was still in my denial stage and wish I hadn't waited.
I am also 54. My symptoms started 2 years ago but I wasn't diagnosed till about 14 months later.
It is great you have family support.
I am sorry you have reason to be here but WELCOME. The info you will find here is FANTASTIC! Ask any questions you want and someone will answer! We are all in this together!
 

hjlindley

Senior member
Joined
Dec 1, 2011
Messages
761
Reason
PALS
Diagnosis
10/2011
Country
US
State
VA
City
Richmond
I have a presumptive diagnosis in 2009 but it wasn't until the final EMG with deenervation/reenrvation patterns that the diagnosis became final. By that time I have had weakness in my right hand for over two years and it arty gone through a cervical fusion. It is interesting to note that the documented presumptive diagnosis in 2009 was sufficient for Social Security to declare me disabled to that date. I did use a compensated disability advocate for the process. Sorry you've joined the club nobody wants to be a member of. Every case is different, no question is stupid, and were all here for you.
Holly
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,663
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
Sorry you've needed to join us on this journey, Bill.
You'll find a wealth of information and compassionate support here.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,605
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Anyone with a reasonably confirmed diagnosis doesn't need to spend the money on an attorney to do the SSDI vit. If you've already stopped working, file immediately. We will all hope it's something the IVIG helps, but can't hurt to get the ball rolling.

There are so few things that are auto-qualifiers for SSDI, but ALS is one of them , and there is no 2 year wait for Medicare. Just the 5 month wait, as there is for checks. There are also VA benefits, if you are a veteran.

There are others fighting to get IVIG. Yourminsurance didn't give you any hassles with it?
 

Bill58

New member
Joined
Sep 5, 2012
Messages
4
Reason
PALS
Diagnosis
8/2012
Country
US
State
TX
City
Richardson
I appreciate the kind words.

The impression I was given from the lady in HR was that the company would coordinate with me after 5 months to transition to Long Term Disability. I think the company pays me 50% of my salary (including what SSDI pays). I will inquire further.

My insurance company provided the IVIG but it took almost a month between the doctor ordering it and the first infusion.

The insurance company is balking at paying for my NCV test, saying it is "considered to be experimental or investigational".

I have attended two ALS support group meetings.
 

jpsteeler99

Active member
Joined
Jun 7, 2012
Messages
63
Reason
PALS
Diagnosis
06/2012
Country
US
State
NJ
City
Waldwick
It was the EMG for me. My Neuro told me that my results were "classic MND" and that I need to go to an ALS Center for a 2nd opinion. They confirmed it but did throw in the disclaimer that there is no true test for ALS.
 

Toto's Dorothy

Very helpful member
Joined
Jan 31, 2012
Messages
1,033
Diagnosis
11/2008
Country
US
State
Kansas
City
Emerald
Welcome to the family nobody wants to be part of.

You have been given very good advice. The only things I would like to add would be stay 2 steps ahead of the disease. Med icare, med icaid and most pri vate insu rances will only pay for 1 hospital bed, 1 chair and I believe 1 lift every 5 years. Take advantage of the MDA's loaner closet. Borrow before you buy. As for the wheelchair, borrow or purchase a manual one. My chair took almost 9 months for me to get and cost about 40 thousand dollars. No I didn't add a zero, 40 thousand. The head array can run 5 to 10 thousand alone. Ask at the next cli nic visit about wheel chair seating cli nics.

As for the hospital bed, make sure the bed is electric and whole bed raises and lowers not just the foot and head. It is easier for your caregiver to change sheets and transfer you in and out of the bed.

Again, welcome, wished we didn't have to meet here. And remember, no question is too small.
 

machaffi

Member
Joined
Sep 7, 2012
Messages
19
Reason
PALS
Diagnosis
09/2012
Country
US
State
Florida
City
Lutz
welcome bill I was diagnosed just a little over a month ago the only thing I wanted to add is that if you are vet you want to get started looking into what they have to offer it sounds like it will be a lot of help. so once again welcome to the club that has a lot of unwilling members. just a thought I have found a lot of loving and supportive people here dont be afraid to ask for help in dealing with this or just someone to talk to who understands...... sorry I ramble a lot
 

ltbeauti

Distinguished member
Joined
Feb 22, 2011
Messages
215
Reason
PALS
Diagnosis
04/2008
Country
US
State
VA
City
Chester
Hi Bill
Sorry you had to find us, but what a great place for info and support. There are people from all walks, all stages here willing to help and give support.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,605
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
NCV investiogational? Are you serious? Really? That's the test that tells if there may be something else causing the muscle issues! Sheesh. It's normal in ALS.
 
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