Uncertainty. One for the blokes.

[JimCWalker]

Hi all.

I had my first appointment today with a Consultant rheumy. After discussing a bit of history, a quick examination of lymph nodes ("I can't see them" Consultant; "blimey they are noticeable!" Radiographer, 2 months ago, no change since) he started on diagnosis.

Basically despite the blood test and physical symptoms it's not likely to be Lupus because I'm a man, I don't have a butterfly rash and I haven't lost my hair. Wow. The GP was very clear that I had SLE and provided lots of info about it. I asked them if they were sure and she said that the blood test was very certain.

On the plus side the Consultant requested a repeat of the blood tests and said that as I'm a man and Lupus is rare in men, he's going to get another opinion from another Consultant at a specialist centre.

The blood form comments stated '?CTD', so this could be his other thoughts I suppose. In the mean time the fatigue plus other neuro symptoms continue unabated and unresponsive to painkillers, mood is all over the place and I feel like I've had a really bad night out. Still at least there no compromising photos out there...I think.

Rock meet hard place!

[LupusKaren]

Morning, not a bloke but wanted to respond. Whilst it is true SLE is predominantly found in women, cursory Google indicated 90% for women and 10% for men. I am pleased your Rheumy has not totally dismissed Lupus, as symptoms are so varied, and not everyone will get the malar rash or lose hair. Of course, it goes without saying I hope for you it is not Lupus, but I know all too well how important it is to have a diagnosis for debilitating symptoms. Good luck with your journey Jim, stay strong, and hang on to your GP, he or she is a gem for being so forward thinking.

[Hidden]

I’m not a bloke either but just wanted to sympathise. I know the same thing usually happens to men, especially young men, who present to the doctor with classic signs of Sjögren’s. They are made to feel embarrassed by the “not a disease affecting young men” thing. My nephew, 27, has just experienced this and it really bothers me that people aren’t getting a diagnosis just because they fit the rare category. It’s rare to win the lottery but it doesn’t stop many from trying! Rare isn’t the same as impossible. Someone has to be in the 10% for it to exist!

[whisperit]

Hello Jim,

There's a brief discussion of lupus in men on the Lupus Trust website here lupus.org.uk/lupus-in-men/

My experience seems to bear out the suggestion that our presentation is complex and "atypical" in some respects. In the past 3 years, I've been described with a range of diagnostic labels, but other than "CTD", none have stuck. Apparently, my most recent bloods show a typical "schleroderma" picture, but I have no skin signs. So there's always been an air of improvisation around how I am treated.

Hope you hit on a good treatment regime anyway x

[Chanpreet_Walia LUPUS UK]

Hi JimCWalker,

Yes, lupus is rare in men however 10% of lupus patients are male. We published a factsheet on ‘LUPUS: and Men’ which you may like to read: lupusuk.org.uk/wp-content/u...

Although skin involvement and hair loss are common symptoms associated with lupus, it does not necessarily mean you’ll experience them. It is important to remember lupus presents differently in everybody, therefore, no two people will share the exact same experience.

To find out the specific tests and criteria that need to be met in order to make a diagnosis of lupus, please click here: lupusuk.org.uk/getting-diag...

Below, I have included some information links which you may find useful:

Fatigue: lupusuk.org.uk/managing-fat...

Connective Tissue Disease definition: rnhrd.nhs.uk/uploads/files/...

Stress/Relaxation: lupusuk.org.uk/stress-manag...

Please keep us updated, wishing you all the best.

[KayHimm]

I would not read the rheumatologist’s comments as dismissive. They are the best diagnosticians in medicine even outside of autoimmune disease. What I heard the doctor say to you is you are not right now presenting as specifically lupus. That does not mean you do not have another similar autoimmune disease. It sounds to me as if the doctor is now running many tests — many more specific than your g.p. — to see if she can diagnosis more specifically. There were clearly labs that pointed to something « inflammatory « or the g.p. would not have sent you for the consultation and the rheumatologist would not order these very expensive tests. Please try to hang in there and trust the doctors are trying to diagnosis you. But these illnesses evolve and as a friend/doctor said to me « have to declare themselves. » My process was similar to yours. It was frustrating, but I do understand now that my doctors were watching and testing until things became clearer.