On paper, my rheumatologist ticks a box that says 'undifferentiated connective tissue disease with Sjögren's syndrom' but during consultations he talks about lupus. For example when I wasn't regarding some kidney pain he said "it's not caused by your lupus" therefore he implies I have lupus without one specific blood marker and because of the lack of the blood marker he can only tick the diagnosis box as stated above.
Is it possible to qualify for PIP with this diagnosis? I have had to give up teaching full time to having to work as a part time teacher because I cannot physically maintain a full time job.
Any advice would be greatly received.
Thanks.
Written by
jennawings
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Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.
You do have some form of diagnosis. Admittedly, it may not seem helpful because this label or "diagnosis" does not suggest a diagnosis.
What this may mean is that your symptoms are still developing and many consultants will not give a final diagnosis until they are certain of the diagnosis. Thus, there is a period of time (months even longer) while the specialist will watch and wait to see what other symptoms occur. I was seeing one of the leading lupus specialists in the UK and internationally and it took him 18 months before a definitive diagnosis. There is no simple blood test and therefore, lupus is diagnosed clinically. Even the so-called "Criteria" is misleading since this was for the purposes of research and not for diagnosing individual patients - but doctors insist on using this criteria!
If you have a medical certificate stating you are unfit for work, you should apply. I must warn you, however, you may be in for a fight as they do not seem to understand lupus or connective tissue disease. There are people who have had to apply to PIP on the LuPUS Message Board, so please feel free to register and ask the question there. The details are below, so please follow them
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I too have sjrogens and lupus and currently claim ESA Benefit.
I recommend you go to this fab website benefitsandworks.co.uk to become a member you pay £20 but it gives you help filling out the forms for benefits and tells you all what they look for in assessments too.
This will be helpful to you if you want to apply for benefits.
I live in the United States so we have a different disability but I had to apply and was approved. I did not apply with lupus but connective tissue disease and migraines (probably caused by or at least made worse by the connective tissue disease and I had a cervical fusion so I have pain when sitting or standing for very long 1 to 2 hours. I tried to push through work but kept missing more and more time. The UK is probably the same as the US you have to prove or have medical evidence that your symptoms prevent you from working. With me it is a combination of symptoms and side effects of medications I take that effect my ability to work and also effect many activities of daily living.
Hi I'm also in the U.S. and after a year and half of trying to keep working I finally had to give in and quit as I was just getting progressively worse. I have UDCT/Lupus, Thalessemia, and Migraines. When I went to the appointment with the disibility doctor he said he would write his report stating that all my symptoms are consistent with Lupus and that he was really sorry I was having such a bad time with it. Then I got a letter from disibility saying that I can appeal their decision but they think that even with my diagnosis that I should be able to work. I can't even do anything around the house anymore and have started a new treatment via infusion that makes me even more worthless for a week and half after each one. I've lost almost all ability to function within the last year. I'm going to send the appeal paperwork in everyone tells me this is very normal and what to expect. But I'm wondering as someone with a similiar disease how long did it take for you to get approved and did you have to go thru a lot of extra paperwork? Hearing about your approval also makes me feel hopeful. I've worked since I was 15 and the last thing I wanted was to give up my business but I was at the point I had no choice and now they make it so stressful trying to get help.
I was denied the first time and got an attorney. I was denied in the appeal and then the attorney filed for a hearing with the judge. The judge approved it. About 90 percent of people are denied until they get to the judge level for social security. I know his decision was based highly on my migraines which makes me unable to get out of bed for 24 hours many days a month. A good social security attorney is almost a must and they get 25 percent of back benefits. Before the judge level they do not review your medical closely. Hope this helps.
Thank you so much it helps greatly. I have many days I also can't get out of bed but even with all my medical evidence with my first application they denied me saying I should still be able to work. So now I was going to start the appeal process. Sounds like maybe I should start looking for a attorney. They make it so hard when it's hard enough just for us to get our paperwork filled out. Thanks I really appreciate the info.
I think the answer to how many times do you appeal a denial is until they tell you it was your last appeal. In the states, usually an attorney or attorney type, is involved. I am aware that people get to a point where the attorney doesn't feel he has any more grounds to appeal a decision. ( Let me add the whole process is very demeaning, demoralizing, anxiety provoking.) When the attorney say he can't go any further, he can still refer you to a judicial judge who looks over the paperwork and attempts to come up with mistakes the denial judge made.
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