Rare Autoimmune Disease-HELP

aadams13

Member
Registered Member
Hello Everyone,

I would like to share my husbands story because his condition is pretty unique and we are going through a hard time trying to figure out what his outcome might be. I have been reading all threads and I think I have a good understanding of what’s to come.

So for his backstory:
He is a 2nd LT in the Air Force and was diagnosed with a rare autoimmune disease called VKH. This particular disease caused him to have intense inflammation in his eyes. At first we thought it was pink eye or allergies but no matter what we did the inflammation continued to get worse. Fast forward a couple of days, his inflammation in his eyes got so bad that he became legally blind to the point where he couldn’t see people’s faces. The doctors then decided to put him on heavy steroids (Prednisone and a mini pharmacy of steroid eye drops) to kill the inflammation. His eyes dramatically improved and he was able to slowly start tapering off of the steroids. He was then sent to Rheumatology to start looking at other medications to treat his disease. He was put on Humira and Methotrexate to keep everything controlled.
Fast forward to now: He is off of all steroids, hasn’t missed a day of work in the last 12 months, nothing impacts his ability to do his job, all labs are clear, and there is 0 inflammation in his eyes. HOWEVER, he is still on Humira and Methotrexate I guess for precautions. One doctor looked at his records and decided to start an IRILO on him. His commanders letter stated that he can do all duties and he recommended to retain him but he can’t go to any bare bases.

Now I know realistically this will turn into a full MEB and based on my research on here being on Humira is a big indicator that he will be found unfit...But I do have multiple questions regarding our situation. I welcome all comments and would love a little more clarity to put our minds at ease.

My Concerns:
-By the grace of God is there an off chance that he could be returned to duty with a limitation code because this had 0 impact on how he performs his duties in the last 12 months?

-would this be service connected because it happened while he is active duty?

-how would they rate him at this moment because his records show previous blindness at first and use of immunosuppressants? BUT he currently has no symptoms. He is stressing because he feels like he shouldn’t have to walk in the VA lying about how he feels currently.

-I am so confused on how he would be rated. If the worst comes and he has to get out would this be a medical retirement? He will have this the rest of his life. I have read threads where people only get 10% for something serious and lifetime....


Please help! I will gladly clarify anything. Thank you and have a blessed day!
 
This is where to start reading. I have an autoimmune disease that effects my eyes, myasthenia Gravis is the name and it specifically causes Diplopia... aka double vision. But since my ocular symptoms are “occasional” instead of “constant” (language on the ocular disability questionnaire 6C), my ocular symptoms are rated at 0%.

 
And given the fact that it clears up completely with medications, expect that he will receive a low rating. Also be prepared that the PEB will say that he’s not fit for duty. In other words, expect the worst and hope for the best, but start looking at a plan B, what you would do after the military.

do some serious research on him being able to be fit or unfit for duty based on the Humira/methotrexate. The only real chance of him staying in would be a fit finding. I’m not an Air Force guy, so I don’t know about that aspect of it. But dig in and keep searching.
 
And given the fact that it clears up completely with medications, expect that he will receive a low rating. Also be prepared that the PEB will say that he’s not fit for duty. In other words, expect the worst and hope for the best, but start looking at a plan B, what you would do after the military.

do some serious research on him being able to be fit or unfit for duty based on the Humira/methotrexate. The only real chance of him staying in would be a fit finding. I’m not an Air Force guy, so I don’t know about that aspect of it. But dig in and keep searching.

Tony your earlier posts about MG have been very helpful. I have been diagnosed with MG and my paperwork just got submitted to the IPEB last week. I noticed, upon review, that my C&P opthamologist checked yes to ptosis, but checked no on diplopia, despite it being present that day and on numerous previous occasions in my file. I input an MFR into the record already to try and get them to take notice before I have to go through the appeals process. Here goes hope.
 
Hello Everyone,

I would like to share my husbands story because his condition is pretty unique and we are going through a hard time trying to figure out what his outcome might be. I have been reading all threads and I think I have a good understanding of what’s to come.

So for his backstory:
He is a 2nd LT in the Air Force and was diagnosed with a rare autoimmune disease called VKH. This particular disease caused him to have intense inflammation in his eyes. At first we thought it was pink eye or allergies but no matter what we did the inflammation continued to get worse. Fast forward a couple of days, his inflammation in his eyes got so bad that he became legally blind to the point where he couldn’t see people’s faces. The doctors then decided to put him on heavy steroids (Prednisone and a mini pharmacy of steroid eye drops) to kill the inflammation. His eyes dramatically improved and he was able to slowly start tapering off of the steroids. He was then sent to Rheumatology to start looking at other medications to treat his disease. He was put on Humira and Methotrexate to keep everything controlled.
Fast forward to now: He is off of all steroids, hasn’t missed a day of work in the last 12 months, nothing impacts his ability to do his job, all labs are clear, and there is 0 inflammation in his eyes. HOWEVER, he is still on Humira and Methotrexate I guess for precautions. One doctor looked at his records and decided to start an IRILO on him. His commanders letter stated that he can do all duties and he recommended to retain him but he can’t go to any bare bases.

Now I know realistically this will turn into a full MEB and based on my research on here being on Humira is a big indicator that he will be found unfit...But I do have multiple questions regarding our situation. I welcome all comments and would love a little more clarity to put our minds at ease.

My Concerns:
-By the grace of God is there an off chance that he could be returned to duty with a limitation code because this had 0 impact on how he performs his duties in the last 12 months?

-would this be service connected because it happened while he is active duty?

-how would they rate him at this moment because his records show previous blindness at first and use of immunosuppressants? BUT he currently has no symptoms. He is stressing because he feels like he shouldn’t have to walk in the VA lying about how he feels currently.

-I am so confused on how he would be rated. If the worst comes and he has to get out would this be a medical retirement? He will have this the rest of his life. I have read threads where people only get 10% for something serious and lifetime....


Please help! I will gladly clarify anything. Thank you and have a blessed day!


With Autoimmune conditions it can be under control for years and flare up again. I have Systemic Lupus that is in a somewhat constant controlled state but still limits what I can do day to day, my second Med Board found me UNFIT. I am Navy. However, when I had my first Medical Board I was getting my all of my Rheumatology care from an AF Rheumatologist and he completed the NARSUM for the board. My impression is the AF, has alot of profile codes that indicate a restricted status where you will be periodically reevaluated. So I think it is possible for your desired outcome.

Talking about the other side, an UNFIT finding and the VA, the proposed findings talked about how my condition was somewhat stable right now but could flare up as was the nature of SLE. But the part that is very applicable to your questions is quoted below

"Also considered in determining that a 100 percent evaluation is VA policy considering the ameliorative effects of mediation when those effects are not specifically contemplated by rating criteria. You are on intense medication management for the condition. Rating criteria for your condition does not consider medication use. Therefore, entitlement to a higher rating on the basis of relief provided by medication cannot be denied. Your condition is evaluated as if your condition was not managed by medicine."

I too had concerns about how it would be rated. When I had my exams, I was very honest about how it affected me day to day and how it typically affected me during my flares. Pretty much giving two answers to each question that was asked. (Right now, ... But when I have a flare ...). VA has access to his medical records that seem like it would document the general level of his current symptoms, so lying to the VA would only cause confusion and contradictions in his claim. And if he is really wanting a fit findings stetching the truth would only hurt him. He should be honest, account for when it flared up but also say how it does/does not affect him right now in remission.

The rating question, it all depends on what DBQ and rating code that it would fall under. Each VARSD Code/Condition delineates symptoms to specific rating percentages so that is a hard one to answer. It might be worth finding out if it would fall under a similar autoimmune condition or a similar eye condition.

My Systemic Lupus was determined to be service connected since it began when I was on Active Duty.
 
Do you mind sharing the DoD or VA source that details how you are to be rated based on your condition without treatment?



With Autoimmune conditions it can be under control for years and flare up again. I have Systemic Lupus that is in a somewhat constant controlled state but still limits what I can do day to day, my second Med Board found me UNFIT. I am Navy. However, when I had my first Medical Board I was getting my all of my Rheumatology care from an AF Rheumatologist and he completed the NARSUM for the board. My impression is the AF, has alot of profile codes that indicate a restricted status where you will be periodically reevaluated. So I think it is possible for your desired outcome.

Talking about the other side, an UNFIT finding and the VA, the proposed findings talked about how my condition was somewhat stable right now but could flare up as was the nature of SLE. But the part that is very applicable to your questions is quoted below

"Also considered in determining that a 100 percent evaluation is VA policy considering the ameliorative effects of mediation when those effects are not specifically contemplated by rating criteria. You are on intense medication management for the condition. Rating criteria for your condition does not consider medication use. Therefore, entitlement to a higher rating on the basis of relief provided by medication cannot be denied. Your condition is evaluated as if your condition was not managed by medicine."

I too had concerns about how it would be rated. When I had my exams, I was very honest about how it affected me day to day and how it typically affected me during my flares. Pretty much giving two answers to each question that was asked. (Right now, ... But when I have a flare ...). VA has access to his medical records that seem like it would document the general level of his current symptoms, so lying to the VA would only cause confusion and contradictions in his claim. And if he is really wanting a fit findings stetching the truth would only hurt him. He should be honest, account for when it flared up but also say how it does/does not affect him right now in remission.

The rating question, it all depends on what DBQ and rating code that it would fall under. Each VARSD Code/Condition delineates symptoms to specific rating percentages so that is a hard one to answer. It might be worth finding out if it would fall under a similar autoimmune condition or a similar eye condition.

My Systemic Lupus was determined to be service connected since it began when I was on Active Duty.
 
Do you mind sharing the DoD or VA source that details how you are to be rated based on your condition without treatment?

Unfortunately, my source for that statement was my the VA write up portion of my PEB findings and I typed it exactly as it appeared. And I am not comfortable sharing my full medical documents. I can only assume they looked at how my SLE flared up over the course of my treatments. Alot of my medicines that I am on mask the pain or specific symptoms. My condition has been documented over 6 years and several different iterations of medicine combinations. So my assumption is that they dug through all of that.

Not sure if that helps. I honestly was surprised when I saw that statement, because it was the opposite of what I expected. I expected parts of my condition to be downplayed. At same time though, it made it easier for them because they grouped several things together under the higher rating that probably could/should have been seperate.

It makes me wonder how my TDRL reexam will go though.
 
Do you mind sharing the DoD or VA source that details how you are to be rated based on your condition without treatment?

Additionally, I think the key word is ameliorative. Which, I am not going to lie, I had to look up.

to make better or more tolerable
Example. medicine to ameliorate the pain

In other words, I do not think the statement meant with out treatment. Just the masking of symptoms.

One example for my condition is my photosensitivity. Time in the sun (less than 30 min) can result in a flare up of my lupus and some major hives. So if I spend anytime in the sun, I take upto 4 anti-histamines so that the visual part of the hives does not happen. It does not prevent the flare up, just the part where people look at me weirdly for a week.
 
As i know from my personal experience - it's caused by toxins released by candida, specifically ethanol and acetaldehyde dehydrogenase. That is the nasty stuff that makes you feel like crap all the time, too, and candida pumps it out like it thinks it might win something. But as should help at least. If you want any more information, let me know (if you can remember to, that is). Good luck!
 
Hello Everyone,

I would like to share my husbands story because his condition is pretty unique and we are going through a hard time trying to figure out what his outcome might be. I have been reading all threads and I think I have a good understanding of what’s to come.

So for his backstory:
He is a 2nd LT in the Air Force and was diagnosed with a rare autoimmune disease called VKH. This particular disease caused him to have intense inflammation in his eyes. At first we thought it was pink eye or allergies but no matter what we did the inflammation continued to get worse. Fast forward a couple of days, his inflammation in his eyes got so bad that he became legally blind to the point where he couldn’t see people’s faces. The doctors then decided to put him on heavy steroids (Prednisone and a mini pharmacy of steroid eye drops) to kill the inflammation. His eyes dramatically improved and he was able to slowly start tapering off of the steroids. He was then sent to Rheumatology to start looking at other medications to treat his disease. He was put on Humira and Methotrexate to keep everything controlled.
Fast forward to now: He is off of all steroids, hasn’t missed a day of work in the last 12 months, nothing impacts his ability to do his job, all labs are clear, and there is 0 inflammation in his eyes. HOWEVER, he is still on Humira and Methotrexate I guess for precautions. One doctor looked at his records and decided to start an IRILO on him. His commanders letter stated that he can do all duties and he recommended to retain him but he can’t go to any bare bases.

Now I know realistically this will turn into a full MEB and based on my research on here being on Humira is a big indicator that he will be found unfit...But I do have multiple questions regarding our situation. I welcome all comments and would love a little more clarity to put our minds at ease.

My Concerns:
-By the grace of God is there an off chance that he could be returned to duty with a limitation code because this had 0 impact on how he performs his duties in the last 12 months?

-would this be service connected because it happened while he is active duty?

-how would they rate him at this moment because his records show previous blindness at first and use of immunosuppressants? BUT he currently has no symptoms. He is stressing because he feels like he shouldn’t have to walk in the VA lying about how he feels currently.

-I am so confused on how he would be rated. If the worst comes and he has to get out would this be a medical retirement? He will have this the rest of his life. I have read threads where people only get 10% for something serious and lifetime....


Please help! I will gladly clarify anything. Thank you and have a blessed day!
The condition will likely be found service connected. But given that he is currently asymptomatic the rating will be low.

VA ratings are based on two things; the presence of a service connected disease/injury and the reduced earning capacity created by that condition. An asymptomatic condition doesn't bring about significant reduction in earnings capacity.

It is possible to be returned to duty with assignment limitations. Given your husband has almost 20 years left to reach retirement, separation is more likely.

If the Vogt-Koyanagi-Harada disease is found SC, your husband will be able to receive medications from the VA for treatment of this disease. Should it become unmanageable later in life and sight lost, his rating could jump to 100% plus special compensation for bilateral loss of vision. Hoping that never happens.
 
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