matthew.michalski Posted March 5, 2022 Report Share Posted March 5, 2022 So I'm a 24 year old male with a diagnosis of multiple chronic illnesses including dysautonomia(POTS), Hypermobile Ehlers-Danlos Syndrome(hEDS), Narcolepsy, Fibromyalgia, GERD, Major depression, possible/probable MCAS & the list goes on... I have been really struggling over the last few years as it seems as if my symptoms get worse each and every year now. I am on 10+ different medications to help me the best possible, but majority of my days only working then sleeping. I am a Certified Pharmacy Technician in a retail setting so I am on my feet literally all day long which kills me. I am lucky enough to still be working the job as I have no other choice at the moment but to make money full-time(around 40-45 hours per week). My question basically is how I should go about getting state/federal disability benefits on a consistent basis. I currently do not officially have a "POTS doctor" or cardiologist. I am currently only seeing a Primary Care Physician, sleep specialist, and psychiatrist. I am planning on making an appointment with my PCP within the next 1-2 weeks and I think he would be the one to help me with my disability case if I do this. This is all very serious stuff to me and I am just trying to do it all correctly. If anyone has any ideas for me - I reside in New Jersey and I guess I would have to follow the state laws as far as applying, etc. because I am not sure if I can work at all the second that I apply for it. I could be wrong here, but if anyone has any experience in this type of situation then I would really appreciate the input. Thank you all for listening and help ahead of time! Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted March 5, 2022 Report Share Posted March 5, 2022 So this is the thread where I discussed how I ended up with a favorable disability decision (I am also in NJ). It basically came down to a question my lawyer asked the vocational expert, a form he asked my neurologist to fill out and the luck of getting a psychiatric expert that understood the condition to be physical in nature. I can additionally provide the name of my lawyer (in Ohio) if allowed. Or PM if it's not. It will certainly take some time though if you haven't started the process at all yet and I mean that in months and potentially years. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 6, 2022 Report Share Posted March 6, 2022 @matthew.michalski I am so sorry you are going through all of this! I am on SSDI for HPOTS. Despite fainting and having seizures at work it took me 2 years to get approved, and I had to stop working 2 years before my approval. What I can tell you is that it probably will take at least 2 years. You will need to show what the reason is that you are not able to work ( what symptoms keep you from working ), are there any things your employer can do to make work easier for you ( i.e. work sitting down, which may not be possible in your work ), and are there any other jobs you can do ( computer related or phone related work ). Keep records of all of your medical appointments and hours or days you have to miss because of your medical condition. In my case I used up all of my FMLA due to POTS prior to having to stop working, and all of these days were related to POTS. Your PCP should be the one doing the physician part of the process. He will have to explain why you cannot work in any capacity and what symptoms/ diagnosis prevents you from working. But your psychiatrist can do it too, since you have a history of depression, which is a diagnosis accepted for disability. You dont have to use POTS as a diagnosis. Just remember that they will need documentation of WHY you cannot work. Personally I think it would be a good idea to talk to your doctors first, explain to them that you are no able to continue to work and make a list of all of the symptoms. Either doctor should be able to guide you with the process. Again, I am so sorry you are so sick and I wish you all the best. Hang in there! Quote Link to comment Share on other sites More sharing options...
Joe Smick Posted March 6, 2022 Report Share Posted March 6, 2022 https://www.dinet.org/profile/44873-matthewmichalski/ I am a lawyer licensed in NY, who got diagnosed with an autonomic dysfunction (not POTS) a year ago. Although I had no familiarity with the SSA and DIB coverage under federal or state law, I figured I could manage it on my own. I was wrong. As the adage goes, only a foolish lawyer hires himself as a client. I was denied, and then denied again on reconsideration just last week. The crazy thing was that, for a time, I had a diagnosis of possible Multiple System Atrophy which AUTOMATICALLY qualifies as a disability under the federal rules (On reconsideration, they pegged me with Pure Autonomic Failure instead.) Anyway, I have retained a specialist attorney in SSA disability (and having moved to NY from NJ, I am ineligible for state disability) and realized in my first meeting that I should have gotten an attorney on board earlier. The SSA works in odd ways, and someone familiar with navigating the system will be of immeasurable help. So my advice is - get a lawyer to help you. Ask around for recommendations, and hire one that works on a contingency. It will ease your burden and hopefully speed up consideration and approval. Good luck! Quote Link to comment Share on other sites More sharing options...
matthew.michalski Posted March 6, 2022 Author Report Share Posted March 6, 2022 @PistolThank you, I appreciate all that you wrote here. The main MAIN thing though is my current financial situation... - I literally have no savings at the moment and I can start saving now, but that would mean I would have to save up money worth the cost of living for at least a year in my opinion which would take I am not sure how long. It gives me a great amount of anxiety about all of this, but I am trying to work on it and figure it out now before it gets too late. I always question if I should go this route in my head and just push through everything as I have been for the last 10 years. My symptoms have always been bad, but I think I am way more "aware" of my symptoms as I have gotten older and learned more and more which is a problem for me I guess mentally. I will definitely reach out to my PCP very soon and talk with him about what's going on for sure. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 7, 2022 Report Share Posted March 7, 2022 @matthew.michalski - I too was very stressed out and anxcious when I went through the process. Maybe you can take some time off to regroup? Definitely a good idea to talk to both your doctors about what is going on and how hard it is for you to just work. Quote Link to comment Share on other sites More sharing options...
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