SSDI hearing coming up. Really scared - Behçet's UK

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SSDI hearing coming up. Really scared

RayRay121
RayRay121
16 Replies

After two years of waiting my hearing is coming up. I am really scared im gonna get denied even though everyone including my lawyer says I have a really good case. Anyone with behcets get SSDI? there is zero chance of me working and i have thousands of medical notes showing it but still it is so scary to have my life in someone elses hands.

Also do you guys have constant blood in your urine? I know weird question but its been 3 years of blood and docs never seem to worry about it....

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gillianTS

Seriously RayRay21 blood in your urine classed as normal!!!... I was always told by my urologist to get to the Doctor if I ever experienced blood in my urine.

Here in the UK the British Association of Urological Surgeons says the following:

What should I do if I have blood in my urine?

Your GP (general practitioner doctor) will normally investigate blood in the urine as a matter of urgency. Most GPs will perform some simple, baseline tests. You may be started on antibiotics to treat a presumed infection. However, if the urine test result comes back showing no evidence of infection, you will normally be referred to your local urology department for more detailed investigations using the "2-week wait" (fast-track) system.

more about this subject here:

baus.org.uk/patients/condit...

Good luck with your meeting, stay positive and don't allow anyone to belittle you, stay in control and fight for yourself.

Gillian :-)

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Zuzu798

Be strong we all here to support you

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Expectthebest

Hi. I just received a fully favorable decision in my ssdi case. Make sure every doctor you see provides letters that you are unable to perform any task. My judge told me she had to look up the disease and went by my physicians letters. She stated " who am I to question medical specialists" so make sure each Dr writes similar statements.

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RayRay121

Thanks I ahve 2100 pages of docs saying im really sick. like 25 hospital stay over the last three years shortest being 4 days and longest being 30 days.

So scary to have your life matter on one thing so much. Thank you for the story it helps

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Expectthebest

I have always had microscopic blood in my urine. It is my normal I guess. Twice I had severe urinary bladder pain and Frank blood clits as a results of Cyclophosphamide. I added mesna and the symptoms went away. I was not able to stay on cytoxan Imuran & remicade combo for more than 3 years. Switched to Rituxan infusion and Revlimid pills daily

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I just had mine. I have fibromyalgia, Hemiplegic migraines and diabetes. My lawyer says he thinks I’ll get it. I have 3500 pages of documents. But like you I’m still scared. My doctors letters were and restrictions were right on the money. The VE agreed there were no jobs for me that fit my restrictions. So I’m hopeful. I didn’t get a bench decision but my lawyer said with this judge that’s rare. So fingers crossed for you too!

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RayRay121

Let me know when you get your approval! gosh i feel if the vocational expert said you cant work then its done right. I mean what else could anyone want from us?

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Lovingdragonflies

I wanted to let you know I got a fully favorable decision. It is possible!!!! Just like expectthebest said...I’d say don’t worry but that’s just stupid to say, I flared the week if the hearing from worry, I’m a worry wort, but that’s the way I am anymore. So I really wish you the best. Now my next battle is to try and get my LTD company to pay what they owe. My other attorney, yes I’m blessed with two, thinks now that Social Security has approved Cigna will. Believe it or not there are worse things than the government, INSURANCE COMPANIES....😬...best wishes to you!!!!!!!!!!! Oh, your judge may not tell your approved st the hearing, make sure, you have an online account. It helped me know I was approved a good week or so faster than I ordinarily would have.

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RayRay121

Just finished.

Judged released a bench decision of fully favorable! He asked a few questions and boom it was done.

I to flared and heading back to the ER as im bleeding all over. Stress is so crazy on our systems

Thanks you to everyone who read and responded to help keep me calm.

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Lovingdragonflies

I’m so happy for you. I wasn’t lucky. I had one of those by the book judges who refuses to say. I even had a by the book Social Security lady who wouldn’t tell me even though the decision had been made. She just told me not to worry. I guess it’s my own fault for being such a worry wort. Well go home and rest when you can. We’re house shopping for single story that can accommodate my electric wheelchair that I’ve been approved for. Yay!!!!

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I know, I just don’t trust it until it’s done. Once my SSDI is approved I’m hoping my LTD finally will be approved as well. They have been awful. I have LTD through my employer and their denials have been criminal to say the least. My lawyer is putting in one last appeal in if my SSDI gets approved if they deny that we have to sue them. We’re in a spot we really need it now though. I need a single story house for my wheelchair now and we live in a really expensive area. We’d really like the extra income to afford the mortgage increase. A watched pot never boils.....will keep you posted. I will say having the doctors letters and documentation I think helped. My lawyer was very succinct and well prepared. The judge asked me thorough questions but there didn’t seem to be anything that was to my detriment. I have like you a very thorough medical history that helps. I hope yours goes well. I was in the middle of a really bad flare and in a rough time. I was emotional and I broke down and cried. This is so extremely rare for me. Not sure if this helped or hindered...but it couldn’t be helped. Judge asked me a stupid question...if I had a caregiver.....yeah right how am I supposed to afford that I’m not on government assistance, we are raising to teenagers and my husband is supporting us. Seems like some do have those benefits and the judges just assume everyone gets to have that...

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RayRay121

Ya im flaring really hard myself now because of stress myself. My hearing is next week so I hope it calms down by then but maybe it would be good for him to see all my lesions and pain on my face... Heading to the ER to get some pain meds. I will say a prayer that you get it. It really should be automatic for this disease.....

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Lovingdragonflies

Prayers for you too. It’s strange how this system works. Social security’s doctor said I had significant cognitive impairment but they still denied me. So I think prayers are where need.

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RayRay121
RayRay121
in reply to Hidden

Thank you for your story! It really helps relieve my anxiety! The hearing is tomorrow morning.

I just got out the ICU yesterday for sepsis and flare that once again closed my urethra. Back to having a folly in for two weeks to see if we can stretch out.

My whites have never been below 15k since this started. My last test showed white cells at 19.7 but I have been told its all caused by pred. My nuet and lyph are always high as well.

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BFalls

I just had my SSDI hearing last month. It was ruled unfavorable but my lawyers are against it so they are proceeding with my appeal. I relied heavily on my doctors notes/statements and did not paint a picture of what it was like when I worked full time (7 years ago). The judge I saw, also focused on erroneous issues as opposed to the diagnosises that keep me from working. They used the fact that I’m a single mother against me. Stress to them that self care is the most important part of managing your illness, I strongly believe that it is. I have a flare up whenever I over do it.

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