Today I went to the physical Dr for social security. Apparently PBC is a rare disease here in the US. Not many doctors know much about it. He pressed on my urq which I nearly hit the ceiling in pain. Than preceded to press my abdomen and said..... did you know your liver is enlarged...
I can't wait to see my heptologist at least he knows what's going on.
This worries my ssd chances. But I still need to see the psych Dr for social security and trust me I plan to cry my eyes out. So much is built up.
What is wrong with these doctors, if they don't know about it a few said I have to read up on it... really where did they get their licences. In a cereal box. Lol
So frustrated!!!!!
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Y-now
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When I first applied for mine in 2014 the Dr for the physical part knew very little as well. Praying things are different this time around. I go tomorrow for my psychological evaluation. Already went for my comprehensive exam & she stated that my exam went hand in hand with my diagnosed HE, caused by liver complications. Praying things go well for us both. Try not to get discouraged & pray with all you have. Best wishes.
Social Security is a very long process please do not stop if you get turned down most people do not get approved until they go the hearing. For me the process took 3 years but in the end I was approved and that was before I had a diagnosis just a list of symptoms. I did it on my own with no lawyer and had little problems with the paperwork or hearing. They make you feel in the hearing like you have to have a lawyer and try to postpone several times so you can get a lawyer. For me I could not find a lawyer to take my case so I just went on alone and enjoyed the money they would have gotten when it was over.
I have an advocate firm representing me. But I started the claim with my other medical issues. I was just diagnosed in late May with PBC in late 3rd or 4th stage my heptologist said.
I've already had my physical exam for social security and I have my psych eval on the 10th. Those appts I've heard are really fast.
Hope all goes well for you. I have a question, I may still be a little too young but what do you mean about going to see different doctors for social security? Does that mean if this disease is seriously impacting your life, you don't have to work anymore? I'm just asking because I would really be interested in doing this in a few years.
I used to work a full time job year round and in the summer I worked a second job as well as take care of my house and 2 kids. As I was divorced. I was always on the go and energetic. I've had symptoms thru out the past 18 to 20 years but didn't stop me. Until 2years ago. I've had 3 surgeries. And when they took my gallbladder all my liver number went really high about 7 months after the surgery. I was still working but my hours dropped to 20 then 16 than 10 per week. With a lot of call outs. I was just terminated via text my manager said it just isn't working out. So now I have no money coming in. I gathered all my IMPORTANT papers and I'm going to social services to see what I qualify for, until I hear from social security. I'm going to be moving back to my mom's house at 50.... talk about depressing.
My advise for you is do as much as you can until you can't anymore. Listen to your body.
See a gastroenterologist who specializes in PBC. My gastroenterologist has a physicians assistant who specializes in PBC, she only sees PBC patients. They are at University of Penn in Philadelphia. I'd rather have a hepetologist who specializes in pbc but I haven't found one yet.
It's rare, aren't we special? Ha!
Good luck in your health care, I'm here if you've got questions or need advice. 20 years Diagnosed at 40, turned 60 last month and doing great!
If you are apply for disability a psych eval will help you get it, it will add to the need of disability. Every lawyer who fights for people trying to get on disability will tell you to go. Most will not get accepted the first time either, the rate is close to a 90% denial. Then you reapply, with a lawyer, always worth it, they will take a % of the post rated total. If you go this route, you should get accepted. If you don't you may have to reapply a 3rd time. The govn does this to try to prove people are actually sick enough to go through all of this! Sorry to say it but this is the way it goes, generally.
When you're applying for a disability claim you must see the doctors that the govt wants you to see. It is paid for & in my case, I live in Indiana, you also get compensated for gas used to travel. They also request all medical records from each doctor you see. My previous boss received a packet of questions that had to be answered & returned as well as my fiancee, who I live with, my friends in Indianapolis whom I stay with when I travel to see my heptologist, she has also gone into my appointments with my hep Dr. I too had a 15 page questioner that was faxed back. It sounds as if they are moving right along with Y-nows claim & mine as well. I know people who didn't even get a appointment of any kind for two years. I applied twice in 2014 with a attorney & was denied both times. This is my third time & I've done it all on my own. With the help of a friend who is a breast cancer survivor. She done hers on her own & was accepted the first time around. It is a stressful & lengthy process. It isn't my choice to go this route of not working but haven't any other options being that Im at stage 4 with all the bells & whistles & some days it's difficult to just hold myself up throughout the day.
My GI said my enzymes were up because of my bone disease... haha I've had ostearthritis for 15 years. My gallbladder removed 1year ago. Um so I went to a heptologist gave all my labs and scans and all my symptoms... he knew it was PBC. I've since been on uroso and had more bloodwork and a fibroscan. I have since been terminated from a job via text. My symptoms are getting worse. I have a social security claim in. I've seen one Dr so far for SS I see the psych Dr on the 10th along with my pain Dr.
Seems like all I do anymore is Drs tests. Which wipes me out.
I live at the Jersey shore. I'm gathering papers to go to social services for assistance
I know what you mean, health care becomes a full time occupation. 2 years ago I had rocketing enzymes, pancreatic cysts, spleen cysts, Chronic UTIs, labial atrophy, labial adhesions, Lichen sclerosis and diagnosed with ATM mutation gene, high probability and risk for breast cancer. One by one I bested each disorder and cope., cope, cope. Saving money is always good so see if you can get a train to your Dr visits, take notes, follow up, exercise, eat healthy, Laugh a lot, watch interesting movies, smoke pot, take naps, be a bitch, except to the people who take care of you and understand what your disease does.
I have a heptologist who is a liver disease specialist.
As far as the psych eval and a physical eval... it's for social security disability. They want their doctors to evaluate you. Not just take the word of your own doctors.
I'm only 60, retired at 58 because I was too tired to work the 10 hour days my public school salary job demanded. I do work one 1/2 day per week now and do get a pension. But it isn't enough to pay for health care insurance and all the meds, apts and procedures! Would I be eligible for disability pay with health care meds, apts and procedures paid in full??? Would I still get my pension!?
Jlruggie, you should contact your social security office with these questions. Im sure they could help you. Im only 43 years old but this disease makes me feel much much older. My 72 year old mother can get around better than I at times😒
I think Medicare only pays 80%. But you would have to ask you county social services office. They can give you a lot of I formation. And get an advocate firm or a lawyer. Once the claim is filed. No matter when it gets approved it is retro. And the advocate firm or lawyer gets 25% or 6000$ from the first check and that's all they get if you don't get approved they get nothing.
Yes. And try to find and advocate firm to help. They actually do almost everything to start you off and even file the. Claim. Than you will start getting papers to fill out from social security themselves. Good luck. It is a long process
Im stage 4 with cirrhosis, small varicies, chronic fatigue, HE, UC, hypothyroidism, fibromyalgia, ascities, poritis, muscle/joint pain, urq pain, ulcer. I think that covers everything. I had to resign from my most recent job due to a restriction of lifting nothing over 25lbs because it could cause a varicies bleed again. A year ago this past May I was hospitalized because of three bleeds. I was unaware that I had progressed into stage 4. I also had to have a 2 pint blood transfusion & the three bleeds were banned. My hemoglobin was at 5 when I went to the ER from puking straight blood. It was such a scary experience, I pray this never happens again.
Pbc symptoms really run the gammit. I'm sorry you have the symptoms you have. I've got no symptoms beyond occasional fatigue right now, stage 2. It's good to know pbc people are qualifying for disability especially since long term health care insurance is denied. I just had an annual specialist visit. Pbc specialist is running tests to determine why she can't get my enzymes down to normal. She's looking at my weight lifting and protein shakes. I'm now using simple pea protein and not lifting weights on the day my blood is drawn. In either case, good luck with this battle, stay as healthy as you can.
Hope today is good for you. I was doing great Thursday, but because of it I o er did it. I even wore a bikini, told I looked great. First time in almost 2 months no swelling until today. I spent most of the day in bed.
Good news I had a severe itching episode so I called the on call doc at my heptologist office. Told me to take benadryl and see my actual heptologist next week, I'm thrilled because they were unable to get me in til middle of the month. But now I'll see him Wed. I'll keep you posted.
I tried to reply yesterday evening but my phone was acting up. Anyways, yes, I've been feeling pretty good for a change. Yesterday anyways. We had a full day. Got groceries, then grilled out with family. Even made a fire & made Smores with the kids. I can tell today that I overdone things. Joints & muscles are hurting today. On a good note, my biopsies from my colonoscopy in May, came back good. No signs of inflammation or infection. I think I get to go through that fun stuff in another year. Im glad to hear that you get to see your hep Dr sooner than later & please keep us posted. That's what I usually take when I have the itch is benadryl. I go on the 15th to see my GI, then back to Indy to see my hep on Sept 25th. Now I go again this Tuesday for bloodwork. Im a little excited to see my numbers, praying they are still moving in the right direction.
Stay strong❣️
Shannon
The pysch doc at SS told me if they can't get you approved for your physical stuff then they try for pysch stuff to get you approved. It's been almost 4 months since I applied but I had 10 different docs to get records from.
I applied for SS in last August 2016. I got a denial letter in Feb 2017 stating the social security dr didn't approve my disability. It's stupid, my dr approve that I'm disable and I also got disability plates. I did repeal in April and now how to wait 6 months to see if I get approve or denied which is in September . I talked to a lawyer and he said if they denied me again he will appeal for me. I'm in Texas in case anyone lives in texas and getting denied too
SSD doesn't usually approve on first go. There is a company called ALLSUP they prepare and apply for You and if denied they reapply at no charge to patient. It was such a relief for me to have someone on my side with knowledge of the SSD protocol. Best wishes!🌺
I know someone who works there, the rule is they deny 90% the first time round. If you return the second time it should be with a lawyer and usually you will then be taken seriously and be accepted. Terrible statistics but true
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