Advice for New Folks; Auto-Immune MEBs and Recalls

Warning: This is LONG, but well worth it. You might want to grab a beer or some popcorn before sitting down for this, or skip to the RECAP.

I'm an AD AF pilot. I’ve been patrolling this site for a year now and I’ve learned some valuable lessons about both the DoD and VA systems. I wanted to share my experience and hopefully provide some situational awareness to those looking for help or just starting out in this process. For background, my current medical state is Rheumatoid Arthritis (knees, elbows, L wrist, multiple fingers, jaw and ANA/CCP/RF+) and Systemic Lupus (Joint pain, morning stiffness, fatigue, photosensitive malar rash, a variety of bloodwork, Raynaud’s (1-2x week), oral ulcers, low grade fever). I ‘flare’ 4-5 times a year for about ten days and have missed work and even been reassigned to desk job where I essentially make my own hours to manage my diseases as I also have steady state of manageable pain. I was a pilot for 4 years, so it’s been quite a dramatic shift. With that- down the rabbit hole we go.

I was first told my I-RILO was going to a full MEB in early July 2016. At the time, my diagnosis was “Undifferentiated Connective Tissue Disease” (UCTD) with Raynaud’s Phenomenon. My paperwork including my eventual NARSUM only read “Polyarthritis.” Within a month I had had my various VA appointments, including the C&P. I walked out of the C&P surprised at how easy going my Physicians Assistant was. He was nice, listened to what I had to say, and even talked about making sure that I got the most out of this experience. After my C&P, but before the report was filed, I was diagnosed with Rheumatoid Arthritis (RA); I promptly sent my Rheum Notes to the PA who was writing my C&P. Imagine my surprise when the actual filed report had more than 30 errors and inconsistencies, including such basic facts as “is there evidence of an auto-immune disease- no.” While he directly refuted statements I had made in the exam, and noted things like “no evidence of pain” (which was, in my admittedly subjective opinion, obviously not true), more shocking to me were the direct contradictions of my Rheumatologist’s notes. He only included phrases in the exam and from the notes that fit a narrative that I was healthy, despite my Rheum’s RA diagnosis, an increase in medication, and notes that my condition was not stable but in fact developing. When I called the VA to discuss these errors, I was told “get a lawyer.”

So I tried. I called the OAC, but was harshly told that they were busy and that I wouldn’t be assigned counsel until after my IPEB had returned with findings. The airmen on the phone advised that I write the Letter of Exception memo and proceed. Which of course, I did, since I thought I had no other recourse (my PEBLO advised that an impartial review only changes the NARSUM, which was mostly correct after I threw a hissy fit over things like incorrect medications, name misspellings, inaccurate dates and diagnosis. The “amendment” that they wrote satisfied my NARSUM needs). This occurred over August and September.

In November, I was diagnosed with Systemic Lupus (SLE). It was in addition to, not replacing, my RA diagnosis- an “overlap” disease. I approached my PEBLO to mail these new notes to my IPEB, but was told that once the package left my base, there was nothing they could add. I would have to wait until the IPEB returned, then appeal via the FPEB. When I called OAC, I again was told to call back once the IPEB returned its findings. On 28 December, the IPEB results were in- 20% for RA, separation with severance. The UCTD (now officially dx’d as Lupus) was rated as “vascular rhinitis” (What!?) and 0%. Again, I called the OAC and was told they’d call me back after the holidays, but they at least took down my name and phone number this time. I elected to proceed to the FPEB, obviously.

After hounding the OAC for two weeks, finally I was given a FPEB date of May and the name of a counsellor, but I could never get ahold of him. It took until mid-February for the OAC to acknowledge that he was too busy for me, and that I’d be assigned a new one soon and my FPEB was moved to April. I called my “new” counsel several times but never got ahold of them. Finally, only a week before my next Rheumatology visit in March, I demanded to speak to a counsellor and finally got one, although not my assigned counsel. Within 60 seconds of hearing my story and looking at my IPEB results, he notified me that I needed to request a “Recall,” which would retract my paperwork and restart the process from scratch. The basis was AFI36-3212 2.3.1 and 3.37, which essentially noted that the PEBLO had made an error in preventing me from sending updated data to the IPEB, and that the Hospital Commander had erred by not recalling my package to include it. I was dumbfounded. How could this have happened?

I finally heard from my official counsel a few days later and the recall was officially initiated. He tried to work some magic with the FPEB to allow my diagnosis to now include SLE, but was told to do it the official way. My package was recalled in March 2017. I have worked with my Patient Advocate, and even he expressed concern over how things had gone thus far. He has been helpful so far, but there is little he can actually do now. The VA tried to tell me they wouldn’t re-do my C&P exam, but I threw a very polite and composed tantrum until they conceded. It is now mid-April, and I just re-completed my C&P exams and am waiting for the official report to be completed and sent to the IPEB.

RECAP: MEB started before I was officially diagnosed with RA and SLE. My first C&P was an outright misrepresentation of my diseases. When I tried to submit updated paperwork, I was rebuked. The OAC failed to assign me counsel until it was nearly too late. Now I’ve had to restart an already arduous process from scratch and have watched my estimated separation/retirement date slip more than a year.

I hope to include updates as they happen, but for now, I just want to summarize a few points of advice for people:

NEVER take “no” for answer. Always be polite and professional, but don’t let PEBLOs or VA officials bully you down the wrong path. You might have to walk out of the meeting without achieving your goals, but call your lawyer, do your research, and game plan your next move. I assumed my PEBLO and even the OAC staff knew what they were talking about, and it added months to my timeline because I didn’t verify in a regulation or memo that they were correct.

Scour all over the internet for both IDES/MEB advice, but also your disease. If you haven’t been to http://www.militarydisabilitymadeeasy.com/, then go now. Familiarize yourself with the terms, lingo, and process timeline, and then hit up the VASRD. I printed out the codes and ratings for my possible conditions and highlighted terms and figures that were applicable to my case in order to remain focused on my intent- communicate the nature of my disease to the IPEB so that they accurately rate my conditions for what I deserve.

Document EVERYTHING. Save every email, military and civilian, that mentions your case, no matter how trivial. Keep a log of your disease symptoms so you can show your doctors/specialists, and have them include the terms, phrases, and measurements used in the VASRD so there is no excuse for a mistranslation. As an example, I had my Rheum use “exacerbation” vs “flare.” Create hardcopies of any applicable paperwork, notes, or lab/test results. I organized an old mobility folder that’s grown to nearly 2 inches thick and it has saved my butt more than I could possibly count. I actually have 2 hardcopies and 1 electronic of that folder so if someone needs a copy of something I have, I can give it to them without having to worry about getting it back.

So there you have it. This turned out much longer than I intended, but I feel like there are some lessons to be learned here. My case is hopefully an outlier, and I wish you better luck in yours. Please feel free to comment here or PM me for more specific questions- I’m here to help.
-GoFlyMike
 

mcsquared

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
Waffles,

My god, I know exactly what you mean with the mother anecdote. Even my wife wades into those waters, it's frustrating. You know they want to be helpful, but it's hard to play along with that thing they read on Facebook.

I have heard nothing back from the ombudsman. He was supposed to get me an answer today, but mum's the word. Doesn't really bolster my faith in our system.

I'm still tapering off of Cymbalta. About to go from 60mg to 30mg. The first time I attempted that jump I felt like I was about to pass out for a 24-hr period. Wish me luck!
 

Waffles

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
Oh my. You must have been on a very high dose of Cymbalta. I do not envy the journey you are currently going through. I had tapered down from a much lower dose. So... GOOD LUCK!

Fingers crossed you hear something from the ombudsman today. I know they are usually really good and staying on top of things and if delays are involved, it is usually for a good reason. One way or another you should definitely have some information soon.
 

goflymike

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
The Mom thing..I cant even. So glad to hear Im not the only who feels that way. They definitely mean well but it is frustrating at times. I had an interesting week. Saw all my stuff on EBennies go up to "Notification Sent" only to get a letter in the mail from the VA saying my claim had been cancelled and I was no longer in IDES. The next day everything online showed "Claim Closed" and I was freaking out; it was 5 days before i finally got an answer. Turns out that letter was just for my Recall, and my actually package made its way back to the IPEB and then to my base (but I did not know this, nor did my PEBLO). Yesterday I finally got my ratings- 80/80, PDRL!!! I was beyond excited since I figured my best case scenario was 70, but I would have accepted 30. Turns out they did some shady stuff with how they rated things (ie they called my 'Systemic Lupus' 'Discoid Lupus' instead so they could then rate my joints individually (which is how I got to 80). Reading through and analyzing the codes I can tell the must have sat down and crunched the numbers a few times to figure out the best way to maximize it; even my lawyer said he was impressed with the "maneuvering" they did. All of it is technically legit too, though not the way I would ever computed it myself. I was happy to be wrong.

BL: Stick with it guys- I know we feel like its "Us against them" but maybe not always. Sometimes they seem to go the extra mile for us. There is Hope!

If you have more questions on the specifics, feel free to pm me as Id be happy to break down how it went.
 

mcsquared

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
Goflymike-

Outstanding! Glad to hear your ratings came back and they were higher than anticipated. And PDRL to boot. I fully anticipate I'll be TDRL for whatever reason. The medical community still doesn't embrace fibromyalgia the way they do other diseases. Regardless - awesome news.

Less awesome news: I just got a call back from the ombudsman this afternoon. Somehow my GM C&P exam has become "lost." QTC told him they have no record of me in their system whatsoever. I am not even going to try to wrap my head around how an entire series of electronic files is "lost." Like, I'm pretty sure this is why we have transmittal records, read receipts, et al. IDK. Anyway, the ombudsman and a PEBLO (not mine though, unsurprisingly) are trying to track down the files.
 

goflymike

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
Mc2'd,

Thats ridiculous! I cant even believe that is a thing! Is QTC like a MSC (VA rep)? Sorry Im not spun up on Army lingo. I was disappointed to see that the VA doesnt really have an "oversight" person like a Patient Advocate or a an Inspector General. Sounds like you could really use one. On the plus side, you know how to "game" the C&P exams a little better now- it might actually help to have them re-done. Thats how I went from 20 to 80%. Obviously I dont have to explain that that was a huge advantage for me. Still this is brutal- im so sorry!
 

mcsquared

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
QTC reviews all of the exams for the VA (and in some cases perform them).

So somewhere between the Fayetteville NC VA, the regional office in Winston-Salem, and QTC, my docket went missing.

I'm more annoyed right now than anything; I have phone interviews for jobs lined up as early as next month and initially had told prospective employers I expected to be able to start around January or February. And now I've lost almost two months.
 

Waffles

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
GoFlyMike: Congratulations!!!! This is absolutely excellent news and I try to live by the "everything happens for a reason" ideology. It seems, that specifically in your case, the re-do of exams was most certainly in your favor. 80% and a fresh new start at life and health without the unnecessary added stress. I bet you probably jumped out of your seat.

McSquared: I'm not even sure what to say except that I am glad you got your ombudsman involved when you did. It really does pay off to be persistent throughout this entire process. I am a human resources sergeant so I know from working with other people in my MOS - how undependable people can be; especially if it doesn't pertain specifically to their life or paycheck. I'm really sorry to hear about your PEBLO's lack of involvement as well. I am certain things will start turning around for you now. Please continue to keep us updated on the status of your claim.
 

mcsquared

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
My exams were magically located and sent back to base last night after hours.

Craaaazy...
 

Waffles

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
I'm telling you! These ombudsman have Harry Potter-esque magic wands. They just "swish and flick!" (sorry if you're not a Harry Potter enthusiast - but if you are, you should get that quote, haha). I would really like to know more about these magical people. I can't tell you how many times I have read stories similar to this and "Wa-la!" the documents mysteriously appeared!

I am thrilled to hear that you don't have to go through the exams all over again. Onwards! Hope it goes smoothly from here on out!
 

b.smith

New Member
Registered Member
@goflymike :
Thank you for detailing your ordeal. Being that you have the same disease, I was wondering if you could read my situation(I'll try and make as brief as possible) and offer any advice:

I am an 18 year MSgt in the AF at Luke AFB w/ Seropositive RA. It first started w/ an ER visit with a septic LT hip; was out for a month. Fast forward a year and it is now in my RT hip. Another ER visit, but this time the fluid was not septic and just aspirated. Advised by PCM to see a Rheumatologist. Diagnosed with RA. Started on Methotrexate. PCM immediately started MEB process because of the medication. His NARSUM was for RA as an active disease and bilateral hips. At this time it was only in my hips. I stopped the methotrexate after a month as it was causing every joint in my body to ache at the same time and it was hard to do anything and led to depression. Tried it natural for a few months. Had numerous flare-ups to include bilateral hips, RT shoulder, fingers/knuckles, elbow, wrist, jaw (migrating joint pain). My flare-ups do not cause any visible outward appearance/evidence and go away after about 4-5 days w/ a Prednisone taper. When the hips flair up, I am put on quarters and am basically bedridden as it even hurts to lie down. As so many others on these forums, my C & P exam was horrible. The doctor gave me the 1 incapacitating episode for the hospital visit and said I had 4+ non-incapacitating exacerbations a year. His notes said I was put on quarters, can't do anything physical, even hurts to lie down, duration of 10 days. Do you have any insight into incapacitating episodes (Because if his notes don't explain that then I don't know what will)? I understand the active disease is not combined w/ residuals, but the outcome of my informal board was 20%/60%. The AF only gave me 10% for each hip and there was nothing on the findings about the RA as an active process. I currently have a FPEB scheduled for 7 Aug. After reading your initial post yesterday, I asked the PEBLO for a recall (which no one ever explained to me) and she is going to present it to the DAWG on Monday. In addition to other joints involved, I have abnormal serum enzymes (liver levels are almost 3x over normal limit as I started the methotrexate again), I have had GI problems that have been basically ignored, and my fingernails are starting to spoon w/ labs showing chances for anemia steadily increasing w/ the last 3 a little over normal limits. All of these things are justification for impairment of health in my opinion. Thank you in advance!
 

goflymike

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
@b.smith,
Have you talked to the OAC? I'd ask about a recall particularly if any of your diagnosis changed since the original NARSUM. Also, if they didn't take ROM measurements for each of your joints, then I'd think you might have a case.

Your story is sad in that it sounds all too familiar- the C&P seems to have been rushed and written to intentionally misrepresent your case. Unfortunately, those exams seem to carry the most weight at the VA. It will be important to try to get the C&P exams done by a different physician at all costs.

What does your NARSUM list as your referred condition? What does the C&P say? Do your Rheum notes discuss which specific joints have active RA (this could be the justification you need to pursue a rating for each joint vice RA as an active process). My RA actually got rated at 10% for 5 joints instead of the 20% I would have gotten for an Active Process. Did the VA give you nay rating at all for the RA?

Lastly, there is no written guidance for "incapacitating." There are theories and old cases that cite definitions, but those are from the 90's and there is no recent evidence of a firm definition. The closest Ive heard to a "rule" is bed rest = incapacitating. From what you told me, it sounds like you have incapacitating. Talk to your Rheum about using the phrase "Incapacitating exacerbation" instead of "flare." I had mine use "exacerbation" since that was the verbiage I needed to get my Lupus %s, but it will hopefully work the same way for RA should you have the opportunity to re-do the C&P or go to the SecAFPC Appeal.

With 18yrs, stretching this sucker out may be your best guarantee of retirement. Plus, if you hit 20, youll be eligible for concurrent receipt, which could be a significant financial increase.
 

goflymike

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
Hey Everyone, got my orders today- Retirement set for 1 Oct. Works out well for me, and I'm very excited to be nearing the end of this endeavor. It has been 386 days since I officially started the MEB (761 since I was put on desk duty). Stay strong, and get smart. Knowledge is power throughout this process- don't let 'them' push you around.
 

b.smith

New Member
Registered Member
@b.smith,
Have you talked to the OAC? I'd ask about a recall particularly if any of your diagnosis changed since the original NARSUM. Also, if they didn't take ROM measurements for each of your joints, then I'd think you might have a case.

Your story is sad in that it sounds all too familiar- the C&P seems to have been rushed and written to intentionally misrepresent your case. Unfortunately, those exams seem to carry the most weight at the VA. It will be important to try to get the C&P exams done by a different physician at all costs.

What does your NARSUM list as your referred condition? What does the C&P say? Do your Rheum notes discuss which specific joints have active RA (this could be the justification you need to pursue a rating for each joint vice RA as an active process). My RA actually got rated at 10% for 5 joints instead of the 20% I would have gotten for an Active Process. Did the VA give you nay rating at all for the RA?

Lastly, there is no written guidance for "incapacitating." There are theories and old cases that cite definitions, but those are from the 90's and there is no recent evidence of a firm definition. The closest Ive heard to a "rule" is bed rest = incapacitating. From what you told me, it sounds like you have incapacitating. Talk to your Rheum about using the phrase "Incapacitating exacerbation" instead of "flare." I had mine use "exacerbation" since that was the verbiage I needed to get my Lupus %s, but it will hopefully work the same way for RA should you have the opportunity to re-do the C&P or go to the SecAFPC Appeal.


Thank you for the response! I have talked to the OAC. It doesn't seem like he cares about my situation. Every time I try and contact him, he doesn't respond or forgets info and regurgitates the same stuff. I tried for the recall, and low and behold, my PEBLO didn't know I could after getting an IFEB rating. Also, I questioned my attorney about the recall and he said he didn't mention it as they hardly ever approve them (WTH!). I initiated the recall to say my condition has worsened with constitutional manifestations/increased impairment to health, I have had other joints involved, my hips pain has worsened and is now constant, the obvious error by the VA, and last but not least, the newly diagnosed MH issues because of all the stress and anxiety over this blatant disregard for correcting an error. The DAWG told the PEBLO to advise me to go to the formal board as it is so close and if I don't leave there with a rating higher than 30%, they will recall it then (not sure if I believe or trust this). The NARSUM lists RA and bilateral hips. I will fill you in as my board is set for next week. I am thinking about consulting a civilian attorney.....
 

mcsquared

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
Update,

I received my NARSUM today. I have 11 unfitting conditions, 9 fitting. I've done an initial looky loo and it seems pretty legit. It was definitely worded to push me onto the PDRL. I disagree slightly with one of the findings, but quite frankly it's not going to be a deal-breaker with the PEB and the VA should rate it anyway once they get the case back. I'll go see legal next week to review and hopefully push it forward.

Started my job interviews this week too. Feels nice to be back in the game after six years!
 

goflymike

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
@b.smith

I don't see why they wouldn't be able to recall after the FPEB, so that doesn't sound like a terrible plan. It might get you a solution sooner, and if they give you 30% Id see about using your one-time reconsideration (VARR) to bump the numbers higher. You can submit additional info with the VARR request so that would be a sweet opportunity to have your specialist and/or PCM re-phrase or highlight the evidence that points to a higher rating. As for the OAC, they can definitely be a pain in the ass. IT might be worth hiring a civ lawyer, but it might be too close to the FPEB. Maybe if the FPEB goes south, Id hire a civ and get the recall. Good luck and please keep us updated!

@mcsquared

Congrats on getting a better NARSUM. Now the waiting game. Good luck with the Interviews!
 
data-matched-content-ui-type="image_stacked" data-matched-content-rows-num="3" data-matched-content-columns-num="1" data-ad-format="autorelaxed">
Top