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Sorry, long post but i really can use the help. Took all the energy I have to type this.
For those of you who got approved for SSI in the USA, it would really help if you can tell me what additional I need to do NOW before applying to make sure I have the BEST chance of getting approved.
I've already been denied once, but I never followed thru after the initial rejection because I assumed I'd never get it.
Background:
- ME/CFS would be considered moderate-severe to severe.
- I am 32, I was completely disabled at 21.
- The chronic fatigue started at 18 during college but I was not fully disabled at the time.
- 9 out of past 10 years, I lived with my parents and they have fully supported me physically and financially.
- There was 1 year (2015) where I thought I was able to work again and was frustrated with my situation so I got a job, moved out to the city, and started working. I lasted 10 months before I crashed and relapsed HARD and it caused permanent degradation because my health has not recovered to the state before then.
Questions:
1) That 1 year of work (2015) really complicates things. Did my disability start at 21 or did it start in 2015? Because Social Security might look at it like, well you were good enough to work in 2015 so you weren't disabled.
But I was definitely disabled at 21 and the 10 months of work was very difficult and not sustainable and ended up doing permanent harm to me. After 10 months of work, I crashed HARD and was bedridden for a full year.
If anything it should demonstrate that I tried to push thru despite being advised against it to attempt to work and not get SSI.
I am going to put 21 because the bulk of my medical records and doctor visits were around that time. It was already assumed I have CFS because by 21 I was dealing with fatigue for 4 years during college already.
I do not have much of medical testing in the past 5 years though. I have a blood test from UCI Emergency room in 2016 when I relapsed from work. ER said it was normal and gave me a CFS handout and a bill for $2000.
My most recent doctor (Gastro) wrote a letter to my employer about my chronic health that was preexisting before work, and he did the short term disability for me at the time.
As many of you experienced, I jumped from doc to doc and tried functional medicine private specialists, etc. and when their treatment didn't cure anything... you kind of move on to another doctor hoping their treatment would work etc.
So there is no CENTRAL doctor.
Should I find a new CFS specialist strictly for the purpose of SSI support, or go with the one that wrote the letter for me 3 years ago?
2) Would these medical records be sufficient?
age 18-21 - Family doctor records of fatigue, neurological weakness. Ordered MRIs and scans.
age 21-23 - blood tests numerous times from UCLA, Cedar Sinai, private clinics, 2 emergency room visits.
Neurologist with head MRI checking for MS.
Allergist checking for immune dysfunction and allergy test
Pulmonologist - Lung function test to check for defect in breathing
Neurologist - told I was anxiety which is not total bullshit. told me to start exercising
ENT - checking for throat for lymph and tonsils, etc.
Neurologist - check for myasthias gravis using a nerve conduction study and EMT(?)
Full hormone work up including testosterone, cortisol, VitaminD, B12, etc.
Thousands of dollars of Functional Medicine/Alternative testing like gut bacteria and health, vitamin testing, porphyrin tests, etc. etc.
3 private Functional Medicine doctors who have acknowledge my condition, tried various supplements, suggestions. Ultimately was not able to help me.
UCLA, Cedar Sinai internist said something was wrong but unable to know what. I was in a wheelchair at the time.
2 Gastroenterologists - checking for celiacs, candida, SIBO testing twice, hpylori testing, elimination diets.
age 27 - Doctor wrote letter to parent's insurance about preexisting condition. Was able to get on parent's insurance
age 29 - blood test from UCI ER from relapse
Same doctor wrote letter to employer regarding my sudden crash for short term disability.
I don't have much in the past 5 years because well... nothing's changed in the world of CFS and my health. I've just been managing.
The medical testing nearly caused me to be bankrupt so I cant go thru that again. Thanks for reading
For those of you who got approved for SSI in the USA, it would really help if you can tell me what additional I need to do NOW before applying to make sure I have the BEST chance of getting approved.
I've already been denied once, but I never followed thru after the initial rejection because I assumed I'd never get it.
Background:
- ME/CFS would be considered moderate-severe to severe.
- I am 32, I was completely disabled at 21.
- The chronic fatigue started at 18 during college but I was not fully disabled at the time.
- 9 out of past 10 years, I lived with my parents and they have fully supported me physically and financially.
- There was 1 year (2015) where I thought I was able to work again and was frustrated with my situation so I got a job, moved out to the city, and started working. I lasted 10 months before I crashed and relapsed HARD and it caused permanent degradation because my health has not recovered to the state before then.
Questions:
1) That 1 year of work (2015) really complicates things. Did my disability start at 21 or did it start in 2015? Because Social Security might look at it like, well you were good enough to work in 2015 so you weren't disabled.
But I was definitely disabled at 21 and the 10 months of work was very difficult and not sustainable and ended up doing permanent harm to me. After 10 months of work, I crashed HARD and was bedridden for a full year.
If anything it should demonstrate that I tried to push thru despite being advised against it to attempt to work and not get SSI.
I am going to put 21 because the bulk of my medical records and doctor visits were around that time. It was already assumed I have CFS because by 21 I was dealing with fatigue for 4 years during college already.
I do not have much of medical testing in the past 5 years though. I have a blood test from UCI Emergency room in 2016 when I relapsed from work. ER said it was normal and gave me a CFS handout and a bill for $2000.
My most recent doctor (Gastro) wrote a letter to my employer about my chronic health that was preexisting before work, and he did the short term disability for me at the time.
As many of you experienced, I jumped from doc to doc and tried functional medicine private specialists, etc. and when their treatment didn't cure anything... you kind of move on to another doctor hoping their treatment would work etc.
So there is no CENTRAL doctor.
Should I find a new CFS specialist strictly for the purpose of SSI support, or go with the one that wrote the letter for me 3 years ago?
2) Would these medical records be sufficient?
age 18-21 - Family doctor records of fatigue, neurological weakness. Ordered MRIs and scans.
age 21-23 - blood tests numerous times from UCLA, Cedar Sinai, private clinics, 2 emergency room visits.
Neurologist with head MRI checking for MS.
Allergist checking for immune dysfunction and allergy test
Pulmonologist - Lung function test to check for defect in breathing
Neurologist - told I was anxiety which is not total bullshit. told me to start exercising
ENT - checking for throat for lymph and tonsils, etc.
Neurologist - check for myasthias gravis using a nerve conduction study and EMT(?)
Full hormone work up including testosterone, cortisol, VitaminD, B12, etc.
Thousands of dollars of Functional Medicine/Alternative testing like gut bacteria and health, vitamin testing, porphyrin tests, etc. etc.
3 private Functional Medicine doctors who have acknowledge my condition, tried various supplements, suggestions. Ultimately was not able to help me.
UCLA, Cedar Sinai internist said something was wrong but unable to know what. I was in a wheelchair at the time.
2 Gastroenterologists - checking for celiacs, candida, SIBO testing twice, hpylori testing, elimination diets.
age 27 - Doctor wrote letter to parent's insurance about preexisting condition. Was able to get on parent's insurance
age 29 - blood test from UCI ER from relapse
Same doctor wrote letter to employer regarding my sudden crash for short term disability.
I don't have much in the past 5 years because well... nothing's changed in the world of CFS and my health. I've just been managing.
The medical testing nearly caused me to be bankrupt so I cant go thru that again. Thanks for reading
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