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Undiagnosed for nearly 4 years, need some quality of life back!
Digestive Health | Last Active: Aug 25, 2022 | Replies (38)Comment receiving replies
@sandy1234 - It seems so frustrating dealing with NHS.
My daughter lives in Sweden and gets the same lack of interest from the medical community.
You mentioned findings on a recent pillcam - healing ulcers and lymphangiectasia. Those are important findings for once.
The doctor can not just “ think” that it’s not causing problems, it has to be proven. Also, why have you had ulcers?
You need to see a top GI doctor to review all of your records. I’m pretty sure that you should be able to have that happen. Is there a patient service office at NHS where you can request that? All of your records should be included.
Another question- you are young and have been bed bound for 4 years- who is supporting you? Do you get government stipends? I would think that you would have to have a real diagnosis to collect government aid?
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Well this was myself and my parents initial thoughts when the results of the pilcam came back through the post. I wasn't given a consultation so had no doctor to speak to about the results, but looking at the ulcers and lymphangiectasia we assumed this was important. However, after complaining to get further investigation, a letter was sent stating that it's a common finding and wouldn't be causing my symptoms and needed no further investigation.
What I don't understand also is that when I had a barium meal and an ultrasound, which was probably 2 years prior to the pilcam, the lymphangiectasia didn't show up on those?
As far as support, I still live with my parents and they support and care for me. It's literally tearing my whole family apart seeing me so ill, but we're getting no further towards getting a diagnosis. Also, yes, I have been turned down for disability benefits multiple times over the years, as I don't have a diagnosis.