I was Diagnosed in December of 2016 with Primary APS. If you want to get to know me a little bit here is my story. stripes.com/news/europe/med...
I fight everyday with energy the most and all of the other things wrong with me. I served 23 years and I am on 23 Medications. Currently I was wondering has anyone been lucky enough to get Social Security Disability around there 42 year old mark. I did my part making myself marketable with a Masters in IT Project Management and have been denied twice stating I still could do my job. On Another note I am doing Keto with the family and feel sick a lot, should I continue or need to try something else. I gain 80 lbs from an anti depressant and trying to get it off.
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jerred5
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I wouldn’t call it lucky, but yes I have APS and have become disabled due to to many strokes and I do receive SSD. It’s not much but it helps. I would file if I were u, u can prob get even better benefits because of ur service to our country, which I thank you for. From the bottom of my heart. I’m sure u have been thru enough and now u have APS. I’m so sorry. Also, the constant exhaustion of APS is real and I deal with it every day as well.
I wish you luck and as I said before, THANK YOU FOR SERVING OUR COUNTRY! S. R.
One more thing, don’t stop trying to get the benefits u deserve, they turn down most people the first time reapply until u get it. U can hire an attorney but they take a lot of your money! I don’t have money so I used my local Legal Aide office, so I had a lawyer thru out the appeals processes, and when I was finally rewarded the disability I was able to pay off some bills with the back pay money not give it to an attorney. Good luck. Be safe
Firstly, thank you so much for the service to our country. It is immensely appreciated by me and my entire family. Welcome home.
I believe you can, but it would be for the subset of specific disabilities that the syndrome itself has caused. Remember, this is a syndrome, not a disease.
You will need to have your doctor guide you initially through this process, to get the process started.
By the way, are you seeing an APS Specialist by chance?
Have a look under pinned posts. Make sure your b-12 is in range, including folic acid) vitamin D is in range, your thyroid is functioning properly ( check the full, extended panel) and check for iron / ferritin level plus platelet levels.
A total blood count every 6 months by a hematologist familiar with APS is critical.
Where are you living now?
Do you still have full military medical benefits.( please tell me yes.)
I know a very good Hematologist associated with BAMC in SanAntonio .
I am adding to this detailed answer, thanks for giving us a read of your very clear history. I will add that is it very important beyond the right specialist who fully understands this condition to ask your specialist to also look adequately at your Thyroid, so many with this disease also have a Thyroid problem, you need tests like this so it is not overlooked and can be ruled in or out:
TSH
FT4
FT3
TGAb
TPOAb
and in addition to asking your doctor to look at your Thyroid, please also ask for vitamin D, B12, Folate and Ferritin
Hi, if it wasn’t for Mary and other experts on this site, I would not be alive today.
I first was diagnosed with APS and TIA’s about 15/20yrs ago. There was no help, I did not understand the other symptoms that I was getting until several years later I came across this site. It helped me understand my problem and I that once you have an autoimmune problem your prone to others, I developed under active thyroid, and It was not until this year I developed Lupus followed by Liver failure plus other health issues which are not auto immune. I knew I was ill and with the experts on this site, gave me advice and I kept on at my GP, and then my body could not take no more. I collapsed, I had swelled up so much you could no longer see my eyes, mouth and body. I was rushed into hospital and luckily for me, I was one of the lucky ones that survived. Another week I would not have been here.
So I would like to say thank you to all of you that gave me advice and the will to live. I’m now on the road to recovery, but obviously the autoimmune diseases will not go but I’m monitored very closely now. Just a word of warning, any one that’s taking any morphine based pain killers and paracetamol can cause Liver problems, I was on both and I ended up with Liver failure.
To add to my answer, a Thyroid which is not working properly can add seriously to the unremitting fatigue and pain, also in some cause depression, aided and abetted by low vitamin D which can make inflammation in the body rise. I hope you get very thorough help to look at everything. The right medical specialist will help you, I am sure. MaryF
Hi Mary, I had every test, scans, etc you can think of, because they are to blame by not taking any notice of what other medication other doctors put me on, I’m seeing all the top doctors. One thing I don’t get, they put me on steroids, and I started of 1 x 4times a day for 2wks and going down a half for 2 weeks, I’m now down to 2.5 daily. What would the steroids have been for. And at first I was put onto 2 injections of blood thinners for my APS, now I only take 1. I see Dr Cohen from the UCH, (she the top specialist),,
So I’m seeing and receiving the best treatment.
Again I would like to thank you for putting me in the right direction.
I take B12, Vitamin D and Iron Supplements because I am always low when I get my blood test. I just went to my Rheumatologist and he said you still have APS and you are still doing good on Coumadin, you don't need to see me anymore unless something new pops up. I live in WCH or Washington Court House Ohio now. I also went up to a APS doctor at Cleveland clinic, he stated to be on life long blood thinners and I will be fine. I am a rare case I am told. I failed the normal2-3 range on INR I have to be 3-4 range so my blood clot stops growing.
Used to work at VA as PCP. If you have a good PCP, they can set you so that SSDI covers you. Yo need the right forms. A good PCP will know what these are and what to say for disability. There are some key phrases. If your PCP or rheum person is junior, ask them to consult with someone in a more senior position. It’s hard to get 100% for conditions at the VA so that’s a good start
They did for me but ive had multiple strokes all at one time within a 72 hour period from heart surgery that caused me left hemiparesis that i have worked very hard to return to my best “normal” possible. Submit and see what happens. Best of luck to you.
I remember worrying they wouldnt give it to me but i had submitted several hospital’s notes for documentation showing the severity of my disability. Make sure you get your documentation in order with proof of what you can and cant do.
Hi jerred5! I worked for a local VA hospital as a registered dietitian. In 1992, I had 17 1/2 years in when I became ill and had to retire. I got disability from the VA.
In about 1998, my social worker brother insisted I apply for Medicare disability. It was a hassle, had to get attorney, but I got it after being turned down once. It is well worth the effort for me because more of my medical expenses are covered. I was 43 when I got VA disability and 48 when I got social security disability.
I also need an INR of 3-4 and Lovenox injections when INR less that 2.7.
Keto helped me but I keep hitting a wall but the wall is not related to keto but inspite of it. I continue with keto and intermittent fasting as at least A1C is down from 7.8 to 5.6, that is one less thing to worry about while I fight to regain my health. I am going to have to leave my IT job soon if something does not change. Good luck to you!
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