Dirty EMG

[preacherman]

I've been using civilian doctors. My wife has Blue Cross through her work.
I guess I didn't think I could use the VA unless I had service related injuries or issues, or unless I was disabled or otherwise in the system.
There is a VA clinic in town locally and a VA hospital in Fargo (Fargo, by the way, is where the Neuro I've been seeing is, and it is about 2 1/2 hours away).
You think I can get registered there before being diagnosed?

 

[Atsugi]

Sure. You really should register. I used to work at the VA in the bill paying department, helping vets whose medical bills should have been paid by the VA, but accidentally weren't.

Remember that VA is three organizations. The health organization of VHA is different than the benefits organization of VBA. Their computers don't easily link up. It takes special effort for one to access the other's data. (The third organization is National Cemeteries.)

At either the local clinic or the bigger hospital there is an Eligibility Office for you to register. You're a vet--you're in. (If you're a rich vet with no SC disease yet, you'll be Priority Eight: they would charge your Blue Cross for any medical services they give you, but it's really cheap.)

Bring your DD214. You'll be assigned to a team of doctors. Normally, it's hard to get an appointment. But get one, just to "meet the doc" and to establish that you've "received VA medical care within the past 24 months." That greases a few skids in case you need them in the future.

Because it's much more convenient, I'm sure you'll prefer to get most of your care through civilian docs and Blue Cross. But the VA hospital's Spinal Cord Injury department will give you the expensive equipment you need, for free.

If any doctor anywhere says "you have probable ALS," get it in writing. First thing is to contact the Paralyzed Veterans of America, who will represent you as your VSO, inform you, and push your papers through. Give a copy of your diagnosis (with your DD214) to both VHA and VBA. The VBA will approve you rather quickly (ALS is expedited) for 100% service-connected Permanently and Totally disabled, and start mailing you significant checks and paperwork for other benefits. You'll be Priority One at VHA. Since you're P&T, your wife will be offered CHAMPUS, which would be important if she should ever lose her Blue Cross.

See the "veterans" sticky post stuck to the top of our "Military" subforum. Print out the 10-page PDF.

But, of course, this is all probably moot, since you might not even have ALS.

By the way, MND, PLS, and Anterior Horn Disease won't count for 100% with the VA, unless you want to fight them by appeal. It's gotta be called "ALS."

 

[preacherman]

You mentioned 'convenience' about getting in to the VA clinic.
I have, in the past, done some carpeting for the local clinic. any time I have been in there working, there is basically no one there but the staff.
Also, I had a sub-contractor working for me for a while and he was always going there for something. He was partialy disabled from a situation in Iraq. He never had any trouble getting in.

 

[preacherman]

But, of course, this is all probably moot, since you might not even have ALS.

By the way, MND, PLS, and Anterior Horn Disease won't count for 100% with the VA, unless you want to fight them by appeal. It's gotta be called "ALS."

Since you mentioned this, one thing my regular Neuro mentioned while I was talking about this a month ago was that there were EMG signs indicating a MND, but they were reluctant to say much because of a lack of symptoms of UMN involvement.

If the problem turns out to be only a LMN issue, even though it won't count for a 100%, do you believe they would offer any kind of compensation other than medical?

 

[Atsugi]

The government studied why so many veterans get ALS. Especially the Gulf vets. They never found a cause, but the statistics showed that there was definitely something service-connected about the disease, so the VA decided that all cases of ALS would be presumed Service Connected, without the vet having to prove a nexus between his disease and his service. So ALS is a "presumptive" illness. You just had to have 90 days active duty and an "other than dishonorable" discharge.

Most illnesses are not presumptives. To get VA to compensate you for, say, Snotty Nose Syndrome (tm), you would have to prove that SNS is somehow disabling or preventing enjoyment of life and that it is "more likely than not" connected or aggravated by your military service. The connection is called a nexus. It would take months or years for VA to research, examine, adjudicate, and rate a claim of SNS.

Let's say you are finally diagnosed with Progressive Muscular Atrophy, an LMN disease. VA has recently made this one a presumptive, but it starts at only 30%. You would receive monthly compensation at the 30% rate. As your condition degrades, you would have to prove that it is now more disabling than it used to be. More appointments, more tests, more paperwork in order to get more compensation. Eventually, you might become rated at 60% SC, at which point you could apply for a P&T rating. As the ratings get higher, you get increased compensation. And, believe it or not, there are higher ratings than 100%.

Fortunately, Uncle Sam does a fairly good job of caring for and compensating people who have been disabled or killed by service to our country. But all the Permanently and Totally disabled vets that I have met have said "the compensation is nice, but I'd rather have my health back."

*** A veteran is someone who, at some time in their life, signed a blank check to the American people, payable "up to and including my life." *** Not many people have what it takes to do that.

 

[lgelb]

The VA has issued at least one ruling in which PLS was treated as ALS. "PMA," a seldom-used term these days, therefore could be appealed for the same status, I'd warrant.

But such an appeal is likely not necessary. It is not unusual at all for ALS to present with LMN signs only. For example, my husband manifested his first UMN signs 2y past ALS diagnosis. Lack of UMN signs does not prevent a diagnosis of ALS from being coded.

As we so often note, the published criteria (which themselves have gone through several revisions) are for research purposes, not billing. And if you look at the trial protocols, most of them allow for PMA/PLS patients, all the flavors, because researchers and manufacturers are fully aware that many believe that all these should be classified simply ALS variants and diagnostic variability is common. Neither the VA nor any private payor has ever attacked a coded and therefore clinical ALS diagnosis of which I am aware. They're not in that business.

So Preacherman and all, ask your docs if any other differentials (PMA really doesn't count since many neuros believe it doesn't exist) are still on the table. If not, ask that they code their best clinical judgment so you can get the benefits you deserve.

Best,
Laurie

 

[Annie's Phil]

Since you mentioned this, one thing my regular Neuro mentioned while I was talking about this a month ago was that there were EMG signs indicating a MND, but they were reluctant to say much because of a lack of symptoms of UMN involvement.

If the problem turns out to be only a LMN issue, even though it won't count for a 100%, do you believe they would offer any kind of compensation other than medical?

In an earlier post your description of your right leg knee reflex sounded like it was brisk: "He did do his own mini neuro exam though... couple of things I noticed about that was that my right leg shot straight out when he struck my knee, but my left knee just jerked a little." [From post #3] So I'm surprised that your neuro says you have no UMN symptoms since brisk reflexes can be suggestive of UMN pathology. This was one of my wife's symptoms that caught the attention of one of the numerous physicians she saw in the long process of her diagnosis. She'd already had a round of electrodiagnostic testing (NCV & EMG) about 6 months previously. It wasn't until another round of EMG testing a year later that she was finally diagnosed with ALS.

 

[preacherman]

Phil;
I am so sorry about Annie.

Yes, I did notice the brisk knee jerk, but the EMG Neuro seemed much more interested in the fact that my left arm, ankle and foot had no reflex whatsoever....which he describes as a sign of LMN issues.

But I don't think they said there were NO UMN signs, just not enough to really get their attention about it.
I really don't remember how it was put, but I am going to see the Neuro that told me that on Monday... she is going to be doing the Lumbar Puncture.
She said she liked doing those... it was her opportunity to relieve her frustrations for the week.

 

[preacherman]

Yes, I did notice the brisk knee jerk, but the EMG Neuro seemed much more interested in the fact that my left arm, ankle and foot had no reflex whatsoever....which he describes as a sign of LMN issues.

Wasnt sure how to edit...
EMG neuro never really said anything..... the neuro I saw who ordered the tests was the one talking about only LMN signs. She is the one that mentioned the lack of reflexes that the EMG neuro had noted.

 

[preacherman]

Remember that VA is three organizations. The health organization of VHA is different than the benefits organization of VBA. Their computers don't easily link up. It takes special effort for one to access the other's data. (The third organization is National Cemeteries.)

At either the local clinic or the bigger hospital there is an Eligibility Office for you to register. You're a vet--you're in.

I appreciate all your info.
The other day I did go to the local Veterans Affairs office and filed what he called 'an intent to file' (go figure file an intent to file... I would say the military, VA, etc. has stock in Weyerhauser, but it was all done on line).
Anyway, I believe, then, that was just about disability benefits.
Is the medical going to be different? Done through the clinic and not the VA field office?

 

[Atsugi]

"Is the medical going to be different? Done through the clinic and not the VA field office?"

Go to www.va.gov/healthbenefits/apply/

 

[preacherman]

Update:

Got back from Fargo yesterday after a bunch more tests... it was great fun....not!

Lets see... EEG norman, Brain MRI normal, spinal MRI did show a pinched nerve going to my left shoulder which the Neuro said may be causing numbness and tingling in my left arm but is not what is causing ell the problems;
vitamins normal,
West Nile and Lyme were negative,
ANA and an MS panel were all negative,
all of the CSF test - I believe- were normal except for some red blood clls in the first tube. I don't really no what any of thos percentages mean, like % Neutrophils CSF, % Lymphocytes CSF, % Macro/Monos CSF, % Eosinophils CSF.... they did not give a normal rang for those so I guess I'm waiting on the Neuro's opiunion on that.
Ferritin was on the high side of normal at about 330.
Only thing above normal was the CK which was just under 500.

My thought here is that good news is bad news.
I think that is what the Neuro thinks also because she said there is nothing more that she can look for and told me that any further evaluation would have to be be done by the EMG Neuro (the ALS Neuro).

One other item that made me kind of nervous.... my wife asked the neuro what it would take to get a blue plackard for the car because I was starting to have trouble walking any great distance, and there was no hesitation at all... no need for any argument or explanation, she just told the nurse to write up the paperwork for a permanent plackard (actually three year, they just called it permanent).
My wife and I both thought that was way too easy; I don't think the Neuro expects anything to get any better.

 

[Atsugi]

It's easy to get a permanent blue Disabled Thingee for your car, because VA specializes in 100-year-old train wrecks. You might be one of the youngest vets they saw that day. I'm 60, and I feel like a kid when I visit the VA here in Orlando.

You still have several hoops to go through. So I'm still hoping for a better diagnosis.

That said, if you think you might have a terminal disease, you should max out your life insurance prior to getting a diagnosis. Policies that don't ask any medical questions are more expensive, but who cares?

 

[preacherman]

Hi;
Update and question:

I got another lab result back from Mayo in MN...

The following antibody was identified:
Calcium Channel
Binding Antibody, N-type.
N-Type Calcium Channel Ab 0.06. Normal range is <=0.03 nmol/L

Seems to me a very trace amount.
I have tried to look it up but anything I found on-line was kind of vague.
Regular Neuro told me that this would be addressed at my next EMG (April 20), but that she does not see that it points directly to anything causing my symptoms.

The only other abnormal lab was the CK level which, as I mentioned earlier, was at just under 500 (actually 489 to be exact).

Any helpful info?

 

[preacherman]

Hi,
I was hoping to get some advice - thoughts:

I have an EMG scheduled in the hospital I have been going to in Fargo for April20th.
I have been having a lot of trouble walking lately... can walk ok for a few minutes except for a limp (because my left foot doesn't really do what I want it to). After just a few minutes I get really... like weary; like I have no strength left.

I have talked to the neuro that did the initial EMG about the increased problem with walking, but he said that couldn't really give me any advice till the next EMG on the 20th.
Ok.... still a long time away though - especially since I see that things look like they are getting worse.

I was able to get an appointment with Neurology at Mayo in Rochester, MN. for the 8th of April.
The guy in Fargo comes highly rated, I am just getting very impatient with the whole thing.
I guess my thought is that I don't even have any kind of diagnosis yet, so should I be seeking to go to Mayo before the place I am going has even really finished what they are doing?
Even though insurance will cover the visit and tests at Mayo, they told me I would probably be there 5 to 7 work days so the whole ordeal could be expensive.
What is money, I know, but perhaps I should wait until after the EMG on the 20th.

Just looking for anyone's thoughts....