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Real members of myPBCteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Anyone that can tell me if it's worth getting a rep/SSI later for applying for benefits???

A myPBCteam Member asked a question 💭
Hershey, PA

I had a contact rep from PA SSI/SSDI and sent all of my info re: my care/tests, etc and he all of a sudden couldn't be contacted...always VM. Now I got a letter of denial saying I didn't forward requested info!!!!!!! I haven't spoken with this contact since May. Thought he was handling it all!!!! Any thoughts??

September 16
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Reactions
A myPBCteam Member

If you’re struggling with SSDI/denial of claims(happens a lot), you should appeal quickly. You should find the appeal form on the SSA website.
You can start, save, and submit your appeal electronically through the SSA Online Appeal Portal. [1] (https://secure.ssa.gov/iApplsRe/start).

This is the best line of defense for first appeal. If you’re struggling (brain fog) you can call 211. They can help you find legal aid for assistance.
There is also the department of aging that can help. Remember a lot of attorneys let you have 15 minutes to ask questions also.
Don’t wait to appeal as it is almost impossible to receive a positive response if it’s over the 60 days. At that point attorneys are the best option.

All my information is based on me dealing with my husband’s initial disability, friends mental health disability requests, medical denials I’ve had to write and legal aid I’ve needed in the past.

Hope this helps.

September 16
A myPBCteam Member

Thank you so much. I have the info ready for the online appeal. And I will probably call my local office to see what they say is missing/needed.

September 16
A myPBCteam Member

The system is a mess, appeal or reapply!!! You have to fight for disability, that’s so sad but true.

September 20
A myPBCteam Member

I think the appeal immediately is the correct thing to do. I know someone who was denied, turned around and appealed then won. She said after speaking with others who had the same experience, denial often happens on the first try.

September 20
myPBCteam

That sounds incredibly frustrating — especially when you did everything right and someone else dropped the ball. You're definitely not alone in dealing with this kind of situation.

When it comes to appealing a denial or navigating SSI/SSDI with a condition like PBC, having the right representation really can make a Show Full Answer

That sounds incredibly frustrating — especially when you did everything right and someone else dropped the ball. You're definitely not alone in dealing with this kind of situation.

When it comes to appealing a denial or navigating SSI/SSDI with a condition like PBC, having the right representation really can make a difference. Here are some thoughts:

- Appeal the denial — you typically have 60 days from the denial letter to file an appeal. Don't let that window close!
- Document everything — dates you sent info, attempts to contact your rep, voicemails left, etc.
- Consider a disability attorney — many work on contingency (no upfront cost) and only get paid if you win
- Look for a new rep — one who specializes in chronic or rare conditions may better understand how PBC impacts daily functioning
- Contact your local Social Security office directly to explain the communication breakdown with your previous rep

Being your own advocate is so important here. As one myPBCteam member shared, writing everything down and going in prepared makes a huge difference when navigating complex systems.

Definitely speak with a new representative or disability attorney as soon as possible given the appeal timeline.

September 16

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