New Twist In Ssdi Saga...so Frustrated

[imapumpkin]

I applied for SSD in August and last week received a call saying they needed more information. When I spoke with the woman from the office she said their in-house doctor wanted what is known as a third-party opinion, meaning they wanted to speak to someone who knows me very well who can speak to how my medical condition is affecting me. She further said that the cases they want to push through get this third-party opinion so that there is less to be objected to in the process (leading me to believe things were looking good for my application getting approved)

They agreed to speak with my mother, with whom I live and who is financially responsible for all my medical bills and who takes care of me when I can't drive somewhere on my own. Apparently they spoke to my mother this morning and when I asked her how it went, she said that the woman she spoked to kept trying to make the issue about anxiety. My mother would try to steer the conversation back to POTS, about how I get brain fog and can't drive certain days, about how my fatigue is so bad I can't function before noon, but the woman kept saying "But let me focus on the anxiety." She asked if I got out of the house, if I felt isolated, as though after all the forms I filled out and all the doctors I referred them to,after all the days I feel too sick to do anything, that this is an application based on Panic Disorder.

I am pretty livid. Yes, I have been dealing with anxiety since I was 17, and I am on very low doses of klonopin (half a tablet of the lowest possible dose) and lexapro (5mg, the lowest possible dose) but it has been well-controled and at this point I feel like I am on klonopin out of chemical dependency on the drug, not because I need it for anxiety. I have not had panic attacks since my teens ended and I entered my twenties (I am 26 now). My anxiety is NOT why I can't work. I have held three jobs since age 17, none of which were affected by anxiety, all of which I was able to work. I was independent and living on my own in Washington, D.C (whereas now I am living with my mother in the northeast) when my POTS flared up and the reason I can't work is because I am debilitatingly tired, can only be on my feet for limitted amounts of time and in warmer months I am too brain-fogged to drive on certain days. The fact that this in-house doctor is making this about anxiety is infuriating. For 9 years doctors see that I take anxiety meds and assume any symptom I have is because of it. When I was in the ER for chest pain with a seriously leaky heart valve, the doctors assumed it was anxiety.

My mother even told this woman that the POTS and excessive tachycardia flare up caused my MVP that my doctor said would likely never need surgical repair, turn into "You need surgery ASAP so your heart is not damaged.". Still this woman wanted to focus on anxiety.

I'm so frustrated, I don't know what to do. I called the woman my mom spoke to and left a message asking her to call me back because I had questions. I jus cannot believe after all the paperwork I filled out about how my neurological disorder was preventing me for workign and living independently and now it seems that the SSD office wants to make it about my anxiety which, I will be honest here, I don't feel is a significant factor in my life anymore, let alone in this decision process. Yes, I believe I qualify for disability, but it is because of my fatigue, my low blood pressure, and the fact that blood is not sufficiently profusing to my organs...not because they think I have panic disorder, which I do not. I would like to be approved, but I need it to be for the right reason.

Has anyone else dealt with something like this? Is this "third-person opinion" thing really a thing? I don't want to hurt my chances of being approved but I need to make it clear to them that I can't work because of my POTS, not because I had panic attacks almost ten years ago.

[KareBear]

I know how upsetting this is, I remember how frustrating going thru the process was. I am wondering though if they are trying to get your SSDI case passed based on anxiety to help you because POTS isn't a recognized illness by SS. In every case they focus on a symptom the POTS gives us. Some people have had their case pass with a diagnosis of depression, anxiety, etc even though it is not what debilitates us but is a result of POTS and are diagnosis' recognized by SS as disabilities. Does this make sense?

In other words, the lady on the phone and the SS doc may very well know you are disabled by POTS but are trying to get your case passed using a recognized disability since POTS is not one. Since you are on Klonopin it may be easier for them to "prove" your case and get you on SSDI. It would be worth talking to her about. She may really have been trying to help push the paperwork thru and this was the easiest route. Just a thought. I hope it gets straightened out for you!

[imapumpkin]

It makes sense, but it's a giant ** because 1) how is POTS ever going to get recognized unless SS acknowledges that it is a debliitating condition? 2) Nothing about my anxiety is preventing me from working; to approve me for SSD for something I don't have is wrong whether it helps push the application to get approved or not. I want no part in having any official government documents asserting that my medical issues preventing my ability to work are anything other than neurological.

[Katybug]

I know this is frustrating.... I specifically told my lawyer I didn't want to address the anxiety dx with SSA. But, he made me and here is why....he said if you have multiple diagnoses, they have to take the cumulative effect of all of them in to consideration. So, even if one dx wouldn't qualify you, the culmination of all the dx may qualify you. So, even though the general lack of recognition/understanding of dysautonomia is irritating for those of us suffering from it, if you want to get SSDI, you may have to play along with them. (They sent me to a psychologist of their choosing who knew nothing about dysautonomia, barely spoke English, and ended up talking to me about a new Persian restaurant he likes. I told him up front that there was nothing wrong with me mentally and the interview was going to be a waste of his time because my disability was physical not mental. I was pretty cheesed off about it at the time too.)

[KareBear]

I do understand your frustration and honestly dont know how to get them to recognize dysautonomias or POTS as disabling conditions. Like Katybug said, you have to play the game to get disability pay. We know why we are disabled. I also had to see a psychologist appointed by SS before my hearing and thought it was total ** too. I went because I had too and because it seemed standard for others going thru the process even though I knew I wasn't depressed. I was awarded SSDI and never really told what diagnosis was accepted, I assumed they accepted the POTS diagnosis but later found out they listed me as having depression and a heart condition. I dont know where they got depression from because I dont take any meds for that and never was diagnosed as depressed but that's what they have listed. I dont like that listed but cant change it and feel as long as I get the end result I needed which is disability pay and medicare then I can live with it.

I think my lawyer really saw how disabled I was and so did the judge, especially when I had to lay on the floor at my hearing lol. I think they did what they had to do to help me get the benefits.

[badhbt]

Sorry you are going through this. What is even more troubling is which one came first the anxiety or the POTS? We all know that POTS causes physical anxiety. Anxiety is created by the ANS. She obviously doesn't know much about the condition and that is what is frustrating. There are some good papers on POTS and anxiety she should read them and stop being so judgemental!

Keep your head up!