This is Care Opinion [siteRegion]. Did you want Care Opinion [usersRegionBasedOnIP]?

"My lupus story"

About: Addenbrooke's Hospital / Rheumatology

(as the patient),

I have lupus. I have been diagnosed for around 5 years.

First of all they thought I had a stroke but then I was moved to Addenbrookes hospital and that is where they found that it was lupus after so many tests, lumbar punctures to find out what was wrong, as I had no signs, no rashes, tiredness or anything like they say I would have.

I just had movements and fidgeting all the time, I went through so many medications, not even cyclophosphamide would work. So in the end I had to have my blood taken out and cleaned and put back in again and that was the only thing that actually calmed it down.

I was that sick from cyclophosphamide I will never have it again, if it was the last thing to resort to maybe.

I'm still not 100% now, I never am and don't think I ever will be. I have been depressed and all sorts, I couldn't even go to school as I couldn't write or hardly walk.

I am on the road to recovery I think.

Do you have a similar story to tell? Tell your story & make a difference ››

Responses

Response from Lee Bennett, Head of Patient Liaison, Cambridge University Hospitals NHS Foundation Trust 11 years ago
Lee Bennett
Head of Patient Liaison,
Cambridge University Hospitals NHS Foundation Trust
Submitted on 01/02/2013 at 16:51
Published on Care Opinion at 17:06


Thank you for sharing your story. It sounds like it took some time to reach a diagnosis but we are pleased to note that you feel on the road to recovery. Please accept our best wishes on this journey.

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
Opinions
Next Response j
Previous Response k