Asking for a friend

[marionofnorwich]

I hope that no-one minds this post but I have a friend who is suffering a lot, and some of his symptoms cross-over with mine although there is no suggestion that he has PMR. He describes symptoms of ME, which he has had for a long time (he is 59 or 60 years old) probably starting with glandular fever in his late 30s.

He also has G6pd (a genetic condition I gather). He is currently experiencing desperately low levels of energy and is house-bound at the moment and having to rest most of the day. He is Sicilian and spend half his life in the UK and half in Sicily.

He is at a loss as to where to turn to for help as the GP process in the UK is pretty useless for non-specific symptoms. Easier to access a speicalist in Sicily but he is here in the UK right now for a few months.

I feel that he has some kind of autoimmune disease/condition and that he would benefit from consultant level advice but who should he ask for a referral to? A rheumatologist? Endocrinologist? Or is there a better type of specialist to ask for especially given the possibly impact of G6pd? I am a bit of a loss to know where he should go and he is so fatigued he is losing the will to live let alone navigate the health system. Any ideas anyone?

[Mayadill]

Because of the possibility of haemolytic anaemia, G6PD is treated by haematologists

uclh.nhs.uk/patients-and-vi...

Re negotiating the system the G6PD being concrete and diagnosed may be a good place to start, let the haematologists refer him on for further investigation.

[marionofnorwich in reply to Mayadill]

That's great, thank you. Actually it is the exact path that my friend's wife is trying to get him to go along but he is reluctant to blame everything on the G6PD although I felt the same as you - ie start somewhere and get the specialist investigating for other possibilities. That gives me confidence to back up my friend (wife) to follow up and press for that referral to UCH. Thanks again

[PMRpro Ambassador]

hopkinsmedicine.org/health/....

Has his G6pd got worse for some reason? That would fit. And a haematologist is the specialty for a start. Well - I say that, but the GP is where you really start ...

[marionofnorwich in reply to PMRpro]

I don't know if it has got worse or not. He had a crisis when he was a toddler when a relative fed him broad beans without realising. He has been to the GP and has had various tests. he believes that he has ME, possibly triggered by glandular fever and he has also mentioned Epstein Barre and feeling that once he gets an infection of any kind, it triggers an episode that takes months to recover from. I think the GP has run out of knowledge but some of the things my friend was telling me struck a chord with my feelings and experience with PMR, especially more lately when I have got to lower doses of pred and perhaps into the realms of adrenal insufficiency. Anyway, he has an appointment with the GP this week but it is a case of what he asks for I think and it sounds as though a referral to the haemotologist is a good idea

[PMRpro Ambassador in reply to marionofnorwich]

They would be able to establish of it a G6dp problem and see what sort of direction to go in. They might even manage to get a MDT consultation (multidisciplinary team) if it is interesting enough.

[marionofnorwich]

Thank you. I will suggest that he asks for that referral - it seems a good place to start

[piglette]

If I go privately I often skip the GP. That is if I know exactly what I require.

[marionofnorwich]

Yes, partly the problem is not knowing whether it is an inflammation problem or blood, viral or what