Manchester Royal Infirmary Lupus Specialist Report after ref from reluctant GP

Hi guys. Well here it is, the result of my request for referral to Prof Bruce at Manchester.

I think I told you that the first thing I saw when entering clinic was a sign " Prof Bruce is not in clinic today!" I had to laugh.

Anyway I saw a consultant who was very thourough and who ordered 10 vials of bloods.

The Doctors report arrived this week and it has taken time for me to ingest it, blood test results and all.

The report is an impressive four pages long which is daunting but satisfying as that was what I wanted, a real exam and investigation that no one else seemed bothered to carry out.

She discussed my many and varied symptoms and the diagnoses I had so far received.

AI Hepatitis

Lupus my original diagnosis showed ANA positive at a titre of 1:640 with homogenous pattern. Double stranded DNA and ENA were negative. At the time I had mouth ulcers, joint pain, hair loss, orbital pain and frequent rashes. Apparently the ANA result was thought to be as a result of the AIHep though Lupus was a possibility and I was started on Hydroxy. This is all new to me I knew nothing of these thoughts and doubts. As far as I knew I had AIH and LUPUS.

During a mainly stable few years I had what the doctor called, Plueritic like and angina like episodes as both were suspected but not found after a lot of investigation.

Recent increase in joint and muscle pain, stiffness in the am and enduring nose mouth ulcers and dryness and skin dryness with very poor sleep and continuing debilitating fatigue add to the redness of her face over her nose and a possible photosensitive rash on the cheeks.

On examination she found tenderness over joints and muscles and positive trigger points. Range of movement good with no evidence of swelling on joints. Mouth slightly dry.

I reiterated my pain and slight deformity of joints which look undramatic but give high degree of pain.

She commented that it could be a Lupus flare my reason for referral, but thought not as I had had such a stable period of 10 years and that ONE GETS LESS FLARES AS ONE GETS OLDER.

Exam pointed to SECONDARY FIBROMYALGIA. She explained it was an unpleasant condition but she expected blood results to be normal. I was at risk of Fibro cos of Lupus. She would normally refer me to Physio and OT to manage Fibro but thought attendance at MRI too much of a journey and recommended it be done locally. As I am on Duloxitine she recommends a trial of Gabapentin or Pregabalin starting on low dose and increasing until it suits me or cannot tolerate and she leaves this in Reluctant GP hands.

The Doc suggests remedies for my dry mouth and eyes.

She commented that newly appointed Heptologist and Immunologist at local hospital may be better as I am not happy with the Rheumy dept I have.

Should I remain unhappy she will gladly see me again in Manchester in a year.

I will pause here and post part two with blood results


6 Replies

  • Ah so you where clear for 10 years I did 15 then 7 then 3 now my feet go cold go for a walk then red raw again do you get ankle pain like giving way and heavy sweating at night that wakes u up so you only get about 4 hrs sleep. Regards john

  • Yes all of the above

  • So u get heavy sweating at night today the middle of my back is like drying bone

  • Footy girl, I have read this and will comment when you've posted and I've read part 2. Sounds like a thorough report.

  • MANY THANKS for this update dear ⚽️⚽️⚽️⚽️

    And for ALL the detail: vvvvv useful & helpful to me & I suspect many of us who are trying to understand this diagnosis & treatment process we seem to endure on & on 😜

    I'm appalled that only now have you learned these early details re the beginning years of your diagnosis. All credit to you for forging your way through all roadblocks to this v constructive consultation

    I'll now read part 2

    But first, I'll just mention that apparently there is a prevailing school of thought amongst immune dysfunction experts: as patients like us age, we experience immunosenscence (medics now acknowledge that most all elderly people...even those without a specific immune dysfunction illness...experience immunoscenesce) and this partly accounts for why some patients get less flares as they get older. Here is a link:

    🍀🍀🍀🍀 coco

  • This sounds an excellent appointment - well worth paying for - well done Footy one big step forward! X

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