Unknown/Rarely known medical condition

My apologies if this becomes long. I have a condition called Postural Orthostatic Tachycardia Syndrome (POTS). It's a dysfunction of the autonomic nervous system which is charged with regulating heart rate, blood pressure, gastrointestinal issues, breathing, pulse, basically every internal bodily function.

My symptoms includes, but not limited to, fainting, headaches, peptic ulcers, chronic fatigue, weakness, loss of concentration, loss of focus i.e. memory (brain fog), lightheadedness, excersise intolerance, persistant nausea, vomiting, dizzyness, insomnia, anxiety, inability to stand for short periods of time (blood will pool in my legs, blood pressure elevates, heart rate increases, then all drops thus fainting occurs - similar reation for exercise. There are many more symptoms that I get I can't remember them all.

My limitations include everything from, no exercise, no hot climates, no stressful enviornments, no prolonged standing or walking and by prolonged I believe my neurologist said 5 minutes, no body armor, no apft no alternate apft event, basically, i can breathe and blink at my own pace and distance (really).

I have been dealing with these symptoms for the past 8 + years. The mysteries of medical science could not effectively give a diagnosis until 2009. Upon the diagnosis my MEB was initiated. Included in my MEB was low back pain - bulging disc in L3-L4, L4-L5, L5-S1 and some other stuff about my back which I can't remember offhand, also, headaches, anxiety, depression, something about my knees easily dislocating and I think there was something else but I can't recall what it was. MEB says all occured while in service but only my back found me to not meet retention standards. I appealed and the meb doc said since I have been in over 9 years and have been promoted and at some point in my career taken and passed APFT that I am not sufficiently symptomatic to affect my military duties. Say what!!

It went to PEB, I was found unfit for my back rated at 20%. I requested FPEB and currently waiting on a date for Ft Lewis. I have profiles dating back to 2002 thru current, ER records, a letter from my Neurologist stating why I cannot perform military duties due to my condition, letters from my NCOIC, personal letters from a former roommate, my landlord etc showing the decline in my health and performance both professionally and personally over the years. I even have a 30 minute DVD made about this little known condition that I have submitted in hopes someone will take the time to learn about my condition. Many people that have this can no longer work full time and most cannot work part time due to it's debilitating symptoms. Many have disabled parking permits due to the worsening of symptoms upon standing/walking.

What more can I do to help my case for the FPEB? I rarely make it to work most days and when I do make it its normally very late morning and I barely make it until 1500. I'm not in a WTU because my NCOIC thought they would not take care of me over there and he understanding and accomodating of my illness. I'm frustrated with the process and with the lack of trying to understand conditions they may not know about. Most doctors do not know/understand this condition which is why it took over 8 years to formally diagnose. There is no cure and medications are mostly to lower blood pressure and increase salt consumption.

Someone please advise, thank you. My apologies for not using spell-check :rolleyes:
 
]What more can I do to help my case for the FPEB? I rarely make it to work most days and when I do make it its normally very late morning and I barely make it until 1500.

lee77,

It sounds like the IPEB only found your back unfitting. The two issues, then, are unfitness for the POTS, and the appropriate rating for that condition. I think you should very clearly be retired, but your issue are complicated and may take some appeals before you prevail. I would focus initially on unfitness for POTS, that should, under any circumstance result in an additional ten percent (though, you should probably be rated much higher).

I think you need legal assistance to fight this issue (definitely on the rating for POTS, though the fitness issue may benefit from assistance, too).

Best of luck!
 
Thank you, I know it will be an uphill battle to be found unfitting, it already has thus far, but regardless of how long it takes I'm going to keep fighting. I've already been going through the whole MEB process for a year. The dvd I included with my appeal was made (by dinet.org) so people with this condition could inform even doctors about what it is all about. I wish there was a way to make sure someone actually tried to find out what I have to go through everyday but I think my medical records truly speaks for itself. (Hopefully those letters will help too)

I have legal on my side but the biggest issue they are having is finding an appropriate VASRD code that comes close to what I have. I was diagnosed by a neurologist, but in the past have been treated by cardiologists. I would consider it to be more a neurological issue than cardiology since the "tachycardia" part results from going from supine to standing position draining the brain of much needed blood and oxygyen. Hopefully I will find some answers soon. Thank you for such a quick response!
 
Wow, finally someone else with my problem on here... I was also diagnosed with POTS last year. After I had a heart attack and a stent was placed in my RCA i started passing out randomly. After many many doctor visits I was finally referred to neuro and diagnosed with POTS. During the search for a cause it was determined I also have asthma, ischemic cardiomyopathy, inferior wall aneurysm, sleep apnea and PTSD. A meb has been initiated but it hasn't even been reviewed by the local MEB here yet. Have you had any luck with treatment for your POTS? I wish you luck with your DES decision.
 
I am sorry to hear about your medical troubles. POTS is bad enough on its own, but add the other multiple issues and it becomes almost too much to handle. I am doing okay with the medication but what is helping me the most is not being able to do much of anything physically. All of the things I love I haven't been able to do in years, like running, bowling, hikes and mostly outdoorsy stuff. The most I do now is walk my dog at the lake, and try to go to scenic places to enjoy that at least. I don't know what caused my POTS, the symptoms started during AIT but over the past 9 years it has progressed and never gotten any better. I've been on and off many medications, right now I only take Florinef, Potassium, and prescription Prilosec for the stomach issues. What helps me besides the dull lifestyle is the forums on dinet.org and the POTS facebook page. In my Doctor's letter to the PEB he states that I have "significant autonomic episodes upon walking and even standing" and he included all of my autonomic tests with results. I really pray the PEB will reconsider my situation and try to learn just a little about this condition and it's life altering symptoms. (BTW, what is DES?)

Are you still able to work with your condition? Most days I cannot much even get out of bed, and if I am home that's normally where I can be found. When I am in my office I can usually close the door and lay on my couch if I am feeling bad, my Soldiers already know and they know when I need those times. Dinet.org offers FREE informational DVD about POTS and I have given several to doctors, therapists at behavioral health, and now legal. This is good when people think you are faking because they cannot see anything physically wrong with you, or when they say/think you just have anxiety or cannot understand the extent of debilitation.

Also, my MEB was initiated on 5 OCT 09. It's just now feeling like it may end soon, but who knows really. Try to be patient with the process, and enjoy the steady paychecks while you still can. I always imagined myself retiring after 20 years but at 9 and a half, I concur with my doctors that I can no longer function in the military and I've grown to accept that. I will let you know what happens, whenever that is. Good luck to you.
 
Sorry, DES is disability evaluation system, the whole med board process. No I am no longer working and haven't for most of the last year. I tried to go half days but after passing out several times waking up under my desk they finally told me to stay at home.

I haven't passed out in quite a while.. I am on Coreg, Diovan and Digoxin for my heart issued and they slow down my heart rate considerably. I still get fuzzy headed when I stand up or if I walk very far but luckily I can usually tell when an episode is coming and can sit or lie down. I have also lost my sense of balance... I have to walk with a cane or walker which is very frustrating. I have an appt with a Neuro down at Stanford who can hopefully shed some light on things. The military docs have all but given up on me. I just keep getting kicked from one doc to the other.

Thanks for the encouraging words. I wish you the best and would definitely fight their decision of 10% as they did not even evaluate your most dibiltating problem. Hang in there.
 
I found out recently the FPEB is scheduled for 17 NOV in Ft Lewis. I got a letter from my Neurologist for the board stating that my illness is incompatible with military service, along with my autonomic test results. I pray this helps my case some. My neurologist also sent me to a gastroenterologist for GI issues I've been having, also a symptom of POTS. After many tests, he determined my gallbladder needs to be removed.

I know that in itself is not an unfitting issue, but as it relates to the bigger illness I hope the board can see some sort of pattern of symptoms here. I haven't scheduled the surgery yet, I need to see how it will affect my board date first. I will see what my PEBLO or lawyer says tomorrow when I tell them. I think I need some sort of approval before having surgery anyway due to the board(?).
 
An update to any interested.

Condition: POTS (autonomic disorder) IPEB found condition fitting to meet retention standards. I disagreed and requested FPEB.

FPEB at Ft Lewis today, my case was sent back to the MTF due to some documents were missing in my case file, some of the timelines were off or unknown and recent gallbladder issue which requires surgery needs to be added. Aside from that, I believe it went well. The board president spoke off the record after my case. He said the board was leaning towards finding my POTS condition unfitting and heavily leaning towards a PDRL determination. He also said not to take that to the bank yet, but pending missing documents (not crucial to the findings but to legally complete my file) the board does not need to agree with the MTF. The MTF didn't believe my POTS was severe enough to not meet retention standards.

I have some advice for anyone with a complex case. Be honest when speaking to the board members. They held more weight on my words and my story, than the stacks of paperwork in front of them, although that was important too. They wanted to find me fit on everything due to my NCOERs and my work history. The question came up on whether I think I can stay in the Army or not. My answer was simple, in the form of a question I said, "how can I tell my Soldiers to do anything that I could not do myself?" All of the board members just looked blankly at me. Then they realized how much it pains me to not be able to Soldier anymore. My lawyer did not coach me or prepare me about what to say to anything the board might ask. My case was complex, with over 9 years of symptoms and various misdiagnosis. I have faith that the end result will be positive. The board president shared a lot with me "off the record" I think he and the others understood what it means for me to have to take off my uniform and leave the Army behind. He just needs to ensure my case file is complete and accurate before they adjudicate it.

I will update once the case is complete. Oh, I also thanked the board for taking their time (4 hours) to hear my case. I told them it was the first time in over 9 years that anyone has listened to my entire history from when my symptoms began until now. I told them I was patient and all I want is a fair chance because whether I'm in the Army or not, POTS will always affect my quality of life. Board expressed how impressed they were with me and everything I had to say. (could be why they went from POTS being a fitting condition to possible PDRL?!) It seemed genuine, I look forward to the final word.

If there are any specific questions anyone has about this board please let me know. It was a pretty complex case, even for my lawyer, so I left out most of the mumbo jumbo in this post.
 
Thanks for updating your post. Sounds like things are going well for your case, so that is good to hear. I can tell from your post that leaving the Army is not your first choice, but given your condition, I am glad to hear that it looks like they will retire you.

For all of you AF folks, I thought I would comment that cases are on a tight timeline at the FPEB at the moment and they are only allotting an hour total for each case. Technically, there is no time limit for the hearing, but I wanted to point out that they move much faster with the hearing in the AF (I see this as a bit of a trade-off...it forces them to concede certain issues and really tends to cut out any extraneous issues. Whether this is a net gain or net loss is hard to say. Just appreciate that the boards are different depending on the service (and the location)).
 
Wow, if my case had only an hour, things could have gone a very different direction. But, as stated earlier mine was a complex one for the board. Lots of moving pieces to make them understand I am a good dedicated Soldier who has been sick for a long time without complaint. I wish everyone luck and one more thing I feel compelled to say, I went in to the board with 20% for my LBP only. I went in there with NO expectations whatsoever. That was a difficult thing to do, but in doing so, there could be no disappointments. As stated before on the board there is no difference with 0%, 10%, or 20%, so nothing the board could have done or said would have hurt me. Even if I was found fit for duty (which they badly wanted to do) I know in a matter of time I'd be right back in the MEB process.
 
Update: Still waiting on a decision from PEB, work hours reduced to 4 hours a day (10-1400) with the normal lunch break (1130-1300). You do the math. Continue to have bad symptoms, fighting to get a local doctor to help me out but there are just no specialists for my condition locally.
 
Good luck, lee77!
 
Okay so my counsel in Ft Lewis called this afternoon with this information- 20% for Intervertebral Disc Syndrome + 10% POTS. Combined rating of 30% Permanent Retirement. The POTS was rated under the code 8999 8911 (siezure disorder I believe)... now I can finally move on with my life and hope for the best with the VA. He also said it could takr anywhere from 2 weeks - 2 months to receive a packet with my retirement orders and final retirement date. I'm praying for 2 weeks!
 
Lee,
Congrats on getting your final word, however that % seems very low for POTS. I know how very unfitting that POTS is so i think it should be so much higher. I can also understand how relieved you must be to get to the end of this long, long road. I wish you the best and hopefully your future is better than these last few months have been.
 
Lee,
Congrats on getting your final word, however that % seems very low for POTS. I know how very unfitting that POTS is so i think it should be so much higher. I can also understand how relieved you must be to get to the end of this long, long road. I wish you the best and hopefully your future is better than these last few months have been.

I agree 10% for pots is awfully low. However I think I'm just lucky to have it be rated at all. I will happily walk away with the 30% pdrl and hope my VA rating will be much better. I think part of the problem is they don't fully understand how debilitating pots is/can be.
 
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