Another Diagnosis?

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The background is a blue wall. There is a sunflower in a white vase on a cream table. The foreground is dark grey text that reads "Another Diagnosis". - Another Diagnosis

On Thursday, I had a meeting in London with a specialist dermatologist about my skin sensitivity and the outcome is quite confusing.

I went up on the train, which was a nightmare. My appointment was early, so I was on the rush-hour train. It was so busy and overwhelming. Luckily, I had some noise-cancelling headphones I could wear and I managed to get a seat. I don’t know what would have happened if I didn’t have both of those! It was only a short walk from the station to the hospital, but it was still very tiring. It was also really loud, even with the headphones on.

The appointment

The appointment went really well. The doctor asked me about everything that had gone on over the past 21 months and about my family history. He then did a physical examination, which included a pressure test on my skin and he checked the colour of my skin.

Another diagnosis

After doing the exam, we talked about what he found. The skin on my hands and feet is discoloured from lack of blood flow, but the pressure test showed my skin is reacting more normally than it did earlier this year. He suspects I have hypermobile Ehlers-Danlos Syndrome and dysautonomia. Both of these diagnoses are relatively unheard of, so it’s not surprising that none of the other doctors suspected them. I had to do a blood test after the appointment to test for things linked to both of these diagnoses, but I am still waiting for the results. The doctor has also referred me to a neurologist who is an autonomic specialist, who will be able to tell me whether the dermatologist is right and is able to make a formal diagnosis if that is the case.

I am really pleased with the outcome of the appointment. Even though it was very overwhelming, I managed to prove to myself that I can go to a busy place. I am also really pleased with what the dermatologist said. Even though hypermobile Ehlers-Danlos Syndrome and dysautonomia are life-long conditions, I am happy that, possibly, I know what is wrong, which will make managing my symptoms a lot easier.

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