Doctor Visit With Ssdi

[Debbie Rose]

Hello all,

I have an appointment with the doctor of the Social Security Disability people and I was wondering if anyone has been through this part of the SSDI process and might have any advise or wisdom to provide for me?

I tend to get really nervous with new doctors so I think my symptoms will be fairly evident but you never know exactly what they are looking for. Just hoped I could get some insight

Thanks Debbie

[Sylvie33]

Hi Debbie,

My interview brought up a lot of emotions for me....I did not anticipate this...so I do not wish to alarm you, but I am focusing on this aspect here so you are more prepared than I was.

I had two interviews back in April: for SSI and for my employment insurer. The SSI one was very perfunctory...very young, inexperienced person...it was over very quickly (and I still haven't heard anything). I'm lucky I'm not depending on it. Everything I get from them will be subtracted from my employer insurance, so I have not called, even though my diagnosis has changed.

However, the employer insurance interview took two hours. I wish to tell you I did find it upsetting, for it was during this very detailed interview process I realized I am truly disabled...since then I have had to adjust to this now undeniable fact, which includes I will most likely not return to my career. This is very difficult. Luckily, the organization is very supportive.

So, all I can say is just be calm, open, and honest...it appears you have the documentation...and be prepared to do a lot of follow-up with SSI.

As for the emotional aspects....You may be in a very different and more accepting place than I was, for I had only been sick for a year. Until about March I thought I would recover completely. The interviews occurred just was my symptoms were becoming severe. ("Good" news for getting disability, but not good news for me!) Just like relief at a diagnosis, but then there is the gamut of emotions in dealing with it.

So, I suggest you might wish to rally support around yourself for this new step: you might also need help in getting a timely response from SSI.

Good luck with this.

Sylvie

[Debbie Rose]

Hi Sylvie,

I was told I was seeing a doctor-was that the person you saw or SSDI?

I know what you mean about the Long Term Disability people. The lady dealing with my case is trying to say it was a pre-existing condition and so I don't qualify. What I was investigating during the years of 2010 to 2013 was pounding heart rate and drop in BP and this "person" is saying I had a heart condition. All the heart tests were negative and I was placed on metoprolol because the palpitations bothered me. But it caused so much fatigue I stopped it after 6 months. My family-well the women- have a SVT episode issue and that was what I thought I had. Now that my TTT was positive for vasodepressor vagal syncope at least I can prove her wrong. Still trying to get all the papers together for them. Just finished my SSDI papers and mailed them today.

I have had fatigue since 1995 and was told it was fibromyalgia but once I had gastric bypass and lost over 100 pounds the "pains" were minimal. But brain fog and problems with focus and concentration were all there. I had to change alot over the years and saved all my energies for my job and lost friends and could no longer enjoy my hobbies.

Until the TTT results my "family" (except my sister) thought I was just lazy and trying to get out of work-Farthest thing from my mind!! I love my job!!

Unfortunately I react badly to stress and though I love helping people the other requirements were changed-increased-and were difficult to manage which caused increased stress. Now just thinking about a stressful situation gets my heart racing...

Anyway, I am nervous so I am jabbering on. Thanks for answering my questions. I will let you know how it went

Debbie

[Debbie Rose]

Hi All and Sylvie,

Well this was a waste of worry. The Doctor was a psychiatrist evaluating my mental status...well I have had depression since my 20's and on medications forever. Part of my symptoms have been the anxiety that pumps up with the rapid pounding heart rate and shortness of breath and they did not know it was part of my dysautonomia. So they are more informed-had my TTT results and my 21 day telemetry report too. They asked me if I thought my "mental issues" were preventing me from working and I honestly told them no....so we will see what is next.

Debbie

[Sylvie33]

Hi Debbie,

Never apologize for jabbering to me, the queen of blathering.

Anyway, SSI might find dysautonomia difficult to understand....it does sound like you have your paperwork in order. You may wish to augment it with information from DINET.

As for your anxiety....well, as someone seasoned in depression and anxiety and now someone with visible nerve death, I fail to see the difference between "anxiety" and "adrenaline surges." It's a sore point with me because I believe "mental illness" is just stigmatized neurological disease. It is no accident that for me my dysautonomia rode in on a wave of depression (and no coincidence neurological disorders like MS and Parkinson's are often accompanied by severe depression). See, now I am going on...

Anxiety with dysautonomia is like anxiety squared.

So don't downplay it to SSI....they are to be commended for recognizing "mental issues" like depression and anxiety as potentially disabling in themselves....if you like, you can present it as "comorbid;" it's the truth.

I was an extremely high functioning depressive (38 years in my field, doctorate at age 41), but dysautonomia did me in...for the near future and maybe more....Seems like you have a similar case.

[Debbie Rose]

Hi Sylvie,

Its funny but as a health coach, I have spent 6 years explaining depression as a chemical deficiency like insulin or female hormones and that is what the antidepressants are meant to do. I have convinced quite a few "manly men" to consider becoming chemically balanced and have been successful at it. That has been my description with anyone suffering from mental disorders-at least depression and bipolar...schizo and the "paths" are another story.

I too have functioned well with my depression just accepting how I have felt, with several lower slips into ideacions but hey, I am still here. The same with my "fibro" diagnosis and the severe fatigue. I raised my son alone and he turned out great but it was challenging to be sure. But other things had to be put aside to be able to continue to work and raise my son. He is 35 now.

When my heart races and pounds for too long my anxiety pops up but I was given clonazepam and it actually works most of the time-I take a half of a 1mg with no other ill effects-odd that it works-have heard negative things about it.

So Sylvie what were your symptoms that lead you to believe you had small fiber neuropathies?? Is that something a good Dysautonomia clinic would look at as part of their workup?

And what do you mean by visible nerve death??

I agree with the adrenaline surge- I think that is an issue with our women (in my family) and in fact may be why both my Mom and Sister has had ablations for SVT episodes. My Mom's heart could race just at the thought of company. I had one of those that lasted 3 hours when I was at my Mom's Assisted Living for their Christmas Party-it was horrible and have no clue exactly about the cause. My sister and my brother and his wife were there and my Mom's dementia was in rare form...it took me almost a week to recover from it-NASTY

That is the part that concerns me-the unexpected reactions away from home without a way to stop it

Anyway, it sounds like we are very much alike in our conditions and am enjoying this back and forth

[Sylvie33]

Hey Debbie,

I'm going to PM you about my saga, but I want to say here that I had small fiber biopsies -- ankle and thigh -- and they both were positive. This is what I mean about "visible nerve death." I also just went to the ophthalmologist, and he sees a bit of nerve damage in my eyes -- which threw me!

Anyway, I will tell you more....

Sylvie