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Tlo57

Active member
Joined
Sep 16, 2017
Messages
46
Reason
Lost a loved one
Diagnosis
09/2017
Country
US
State
FL
City
Winter haven
My brothers neurologist confirmed Duke University's ALS dx after 2nd battery of tests.

His doctor completed the ALS questionnaire for the VA. He then submitted it to his PVA Rep who informed him today to expect his 1st check in November! They're going to schedule an appt w/ a doc at the VA in order to determine his eligibility for special compensation.

I need to say thank you from the bottom of my heart to all of you Vets who gave us guidance and support throughout this process. Thanks to civilians too!

He was so relieved to get that news today. Had it not been for this forum and it's members, we would not have known that it is a service connected disease.

I got to see him for the 1st time since his dx. I was shook up by the drastic physical changes in him and feel really powerless in that I can't fix it. He's dealing with it stoically.

It was incredibly rough for him working bell to bell in his condition, so the VA compensation is a huge relief.

Immediately after he receives his 1st check, I'll be filing a claim for his SSD.

He and I reviewed his EMG test results, but we're not very savvy in this area. He asked if I could post them on this forum with his personal info. blacked out in hopes of getting help with translation. Another member (awesome friend) mentioned that there are several ppl here that might be willing to help. Can anyone advise in this area before I make a move or post?

His doctor hasn't offered him any explanation or details. He said he'd see him in 3 months. I told him that we should consider finding another ALS doc in his area. He was receptive to that idea.

Hopefully when he sees the VA doctor for the SC appointment, he can answer our questions about medication, progression etc.

Again, can anyone help - translate with EMG results?
Thank you
Tina
 
I am sorry it was confirmed. You may certainly post the emg with questions. None of us ( as far as I know) neurophysiologists but we might be able to help.

He has to work until he gets his first VA check? Ouch! Is there no way he can manage to stop now?

Some of the VAs have really good ALS care others seem to be less focused. You can do a search for the VA he goes to and see if any one here has posted about it. I gather Duke and the Durham VA are too far for regular care otherwise I would say go there
 
Thanks Nikki.

He's close to the Johnson City VA. He's in Knoxville. I've heard that they have a decent clinic.
 

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Very sorry for this diagnosis.

You didn't post any questions about the EMG?

The important bit is not all those pages of columns and numbers (unless you are a neurologist) but the conclusion summary at the end which explains what those columns and numbers added up to. That is where it clearly states that the EMG shows lower motor neurone disease. ALS involves upper and lower motor neurones and the neurologist finds the UMN signs by clinical examination while the EMG only find evidence in the LMN. To determine ALS it has to be found in 3 areas of the body and it's obvious in the summary that it was 'widespread' so we can figure there were at least 3 areas.

Please do ask questions if there is something specific there that you need to understand.
 
To add to what Tillie said in the charts the things that show where they found issues are in the chart that has columns for fibs psws etc. in the left hand column they name the muscle so if you look across the columns for the fibs psws muaps and recruitment are red flags and you can see many muscles are involved unfortunately

The three areas for clinically definite ALS by El Escorial criteria are lower limbs upper limbs and bulbar. It looks like there are issues in all three and with a clinical exam that supports upper motor neuron disease( reflexes, spasticity clonus) and whatever tests they did to rule out mimics ( there are fewer things to rule out with multiple areas involved) that is how they get the diagnosis

A note about number of involved areas for others who may read. The El Escorial criteria are confusing. If you don't have three areas involved that does not mean you don't have ALS. If you have widespread disease only in your legs for example ( by exam emgs and appropriate rule outs) you might be told or see in your chart " possible ALS". This is the El Escorial criteria designation for one area. It does not mean the same as maybe ALS. They don't think you might have something else. 2 areas is probable ALS. Many trials accept possible ALS. Pretty much all accept probable. A significant number of PALS die before getting to " definite ALS" and a lot of people you see at clinic are possible and probable
 
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Thank you Tillie.
The neurologist, Dr Radoff in Knoxville states on the VA paperwork ALS. He did a full MRI after the EMG was performed at Duke. I was concerned about the "widespread" stuff. My brother asked to post and get back to him. In fact, he called on his way to work @9:30am to find out if anyone responded. I want him to get on here, but 1st I have to mark some of my posts private or delete, delete, delete lol!

Again, on our 1st night, we went out for dinner and to watch him struggle just to get out of his truck and make his way into the restaurant to our table literally broke my heart. I've mentioned that we are twins, so growing up, we went to war, but he ALWAYS kicked my butt. Our oldest sister claims that she hated to babysit because when our parents left, we would pull knives on one another causing her to have a nervous breakdown lol. He didn't have enough strength to hang the handi cap sign on his mirror, nor did he have the strength to grab the to go coffee I handed him through the truck window. Based on his attitude, he's the strongest guy I know and I'm not ready to lose him.

To be honest, we are Italian Americans, but the columns and numbers were Greek to us. He didn't ask questions? I'm going to keep looking at yours and Nikki's posts a few x's so that I can explain it to him.

THANK YOU
 
I just want to add that the number of muscles noted as abnormal at diagnosis and the numbers do not reflect future speed of progression. So to be honest, once ALS is confirmed by an initial and second opinion, I wouldn't dwell on the EMG but rather on living as well as possible with ALS, including plans for the future.

Best,
Laurie
 
Thanks Nikki for your help!

I was hoping for PMA, but based on what you & Tillie have said and the more I look at reports, it's undeniably ALS. Also, my brother said that the Nuerologist wouldn't risk his profession or anything else for that matter by stamping the VA claim "ALS." I said maybe he's trying to help you obtain benefits, but my bro said my thinking is rediculous and that he himself wouldn't submit the claim if there was any dishonesty involved.

In response to you asking if he could stop working early, the answer is a definite no because when he was healthy and pumping out cars at the dealership, he didn't save for this rainy day. The previous management was very supportive of his limitations, unfortunately, the change in ownership definitely sucks.

I previously posted that he fell at work on the tile floor and required 11 stitches. They wanted to get rid of him, but felt they couldn't just axe him because of his disability, so just prior to our visit, they short changed his check by $750.00, creating financial difficulty as a means to provoke him to quit.They were successful, however, the old management offered him a position at a new dealership w/ a $ monthly guarantee regardless of quota because they absolutely loved him. The only downside is that it's a 3 hour round trip commute, so when he has to pull a 12 hr., bell to bell, he's exhausted by the time he gets home.

The way he faces hardship and the tougher than nails attitude despite his limitations amazes me.
 
It's funny Laurie that you say that because he's focused on the positive. I'm guilty of stressing over progression and time left, but I don't Let him know that.
 
I will just note that if he pushes himself like this he will likely speed up his progression.
Of course that's his choice, but just so you know, being 'tough' with ALS doesn't work.

It's completely heartbreaking to watch the person you love go through this.
 
I know you're right Tillie. I really hate having to nag him.

When he stood up at restaurant after dinner, I noticed that he was leaning completely forward and came close to hitting the floor. I told him that he needs to be very careful, but he blew me off w/ an excuse about how he can't get up any other way.

He also almost went off the curb when we got out of his truck because he wasn't paying attention. We got into it when he said to leave his cane in the truck when we got back to his place.

I'm going to set him up immediately with a user name and password so that he can read all of this 1st hand! He prefers that I relay this info., but he really needs to hear it directly from the horses mouth!
 
I am sorry Tillie is right. The toll of overexertion can hardly be overstated.

I have to question whether he is safe to drive at all , let alone 3 hours a day, especially 1.5 hours at the end of a gruelling day. Was this addressed with the doctor?

Is there no way to bridge the time until the VA comes through? We are talking 2-6 weeks. Credit cards, a loan, anything? Ultimately as you know working longer delays social security too
 
He recently had his cell turned off for nonpayment because he was screwed out of $750 from his last check. He's too proud to ask so I went to the store and paid the bill because he doesn't have a landline and God forbid anything happens. I noticed that his was off, but hers wasn't. I've offered to pay his rent, but so far he refuses the help. He didn't have any food in his fridge, so we did a little shopping. He claims that his wife stops at the store every night after work, hmmmm.

I once mentioned that she and I had a falling out. I sent her a message asking to put it behind us Nikki for his sake, but no response. I stayed in a motel most of the week, however, I stayed at his place the night before my return. She made it a point to come home very late and proceeded to lock herself in the bedroom. I asked him if she was upset w/ me there and he said he didn't care because he pays all of the bills. I was so happy because I don't do wuss lol. We left before she got up too, so that was a good thing. On a lighter note, when I got there I proceeded to wander around and straighten out pics on wall because all of them were crooked. He laughed like hell because she purposely hung them crooked. Who knew? I really wish she would let it go because of what's going on with him. He doesn't need added stress and I want to be contacted by her in the event of an emergency. She told him that when he gets his compensation and quits, she doesn't want him sitting around doing nothing so he needs to volunteer a few days per week. Are you getting an idea yet of what I'm dealing with?

He's having a difficult time keeping his head up because he's suffering w/ the drop head syndrome. I guess that has to do w/ thorasic muscle? At least that's what I've read. He's exhaustedtrying to keep his head up and he has serious indentations in both shoulders. I've offered to purchase a brace and have it sent to him. I told him to push his stupid pride aside. Does it have to be a specific brace?

And yup Nikki, we can't file an SSD claim while he's still working. I would gladly pay his rent until 1st check, but hes refused any help. We have 3 other siblings, a couple of them are very well off and not even one of them has stepped up to the plate. In fact, he rec'd a lousy "get well soon" text from them when they heard the news. They didn't even have the decency to call. You really find out just how selfish family can be in times of need or duress. They make me ashamed to be related to them.

I created a profile for him so that he can be a part of this group. I told him to go to his email and click on link to activate registration. He said he would do it tomorrow - it's always tomorrow lol. I'm going to get him connected to you and several others if it kills me. I think the connection with others who understand ALS and its difficulties/challenges would do him a world of good.

Can you suggest a brace?
 
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I am sorry for you and for him. What you describe happens too often.
 
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