REFERRAL TO DR ROD HUGHES

[Heather270240]

Hi folks. I expect several of you will remember my tale of woe recently when I said that my GP wanted to know why I wished to be referred to a Rheumatologist. I have GCA and lost the sight in my left eye 2009. However in January when I saw my Haematologist (I also have Essential Thrombocythaemia) I asked about my GCA and she admitted that she knew very little about it and referred me immediately to a Rheumatologist. When I phoned yesterday to follow up the referal I wasn't even on the waiting list. Fed up with trying to cope with what I can only assume is a relapse in my GCA I phoned Dr Hughes' secretary early this morning and made an appointment for next Monday morning at 9 am. I have heard so many good things about Dr Hughes so I am feeling very optimistic about my visit. I will give an update next week.

[Hidden]

I saw him several weeks ago, privately, and as a second opinion... He is lovely, thorough and patient. I don't think you'll be disappointed (unless like me you're hoping he's going to say "It's not GCA, it's just a virus.") Hahahahahaha, no such luck. ; )

[Heather270240 in reply to Hidden]

I am also seeing him privately. I haven't seen a Rheumatologist since 2014 and I am not likely to see one here in Maidstone.

[PMRpro Ambassador]

All the best - he does listen and he knows his stuff. What more could one want? Except him to say, no, of course it isn't GCA...

[Heather270240 in reply to PMRpro]

I wish!!! I am seeing him privately because GP wouldn't refer me but if he's good I don't mind. I haven't seen a Rheumatologist since 2014 in Maidstone and all he had to say was to come off the pred ASAP!!! No further appointments. Obviously GCA is not important where Maidstone Hospital is concerned. I will keep you posted.

[PMRpro Ambassador in reply to Heather270240]

I've yet to hear a good rheumatology story out of Kent. One friend travelled to Leeds!!! And eventually got the correct diagnosis - which wasn't PMR/GCA...

[Celtic PMRGCAuk volunteer]

Heather, from my experience with Dr Hughes after ditching a useless rheumy, I feel sure you won't come away disappointed from your appointment. Just today, I received a 'phone call from an ex-PMR sufferer who saw Dr Hughes yesterday after a month worrying that the odd pains in her head/neck were GCA-related. She said he listened and explained everything very clearly (don't be surprised if he draws little diagrams for you!), gave her a steroid injection and she came away relieved and much happier than when she walked in. Even her husband said how impressed he was with Dr Hughes's approach. I promise you will be, too. I hope it doesn't turn out to be a relapse in your GCA but, if it is, you will be in the best hands next Monday.

[Heather270240 in reply to Celtic]

Hi Celtic. Unfortunately on reading a lot of the comments on this website, I don't think I have textbook GCA. I have no or ever had PMR and at the time, March 2010, I had no headaches or other types of pain just jawbone claudification, which my GP at the time said was nothing to worry about and said to go on holiday and enjoy the sun. ESR 127 CRP 63. So I went on holiday and woke up 4 days later with no sight in left eye. Luckily I was close to Reina Sofia University Hospital in Cordoba where I was treated immediately. They diagnosed Thrombosis in central artery of the retina - Temporal arteritis. I also had a biopsy in Spain which confirmed Giant Cell Arteritis with central retina arterial obstruction. I shall therefore be very interested to see what Dr Hughes has to say. If it wasn't for the extreme fatigue, continual nauseous feeling, lightedheadedness and numb down my left side, I would be fine. I am on 7 mg, My Haematologist was so concerned about my symptoms that she sent me off for a PET scan. I haven't had the results yet. I will let you know how I get on.

[PMRpro Ambassador in reply to Heather270240]

Many people do not have PMR symptoms with GCA, nor headaches. There is no "textbook GCA" in real life - and that is a lot of the problem as you discovered. However - RH does tend to think outside the box in my experience!

[Heather270240 in reply to PMRpro]

GCA was explained to me by the consultant in Spain and I came away with a lot of leaflets, and a very detailed report for my GP. However here in the UK, or should I say in Kent, GCA/PMR is not treated seriously so I look forward speaking with someone who knows what he is talking about. Incidentally I phoned Maidstone Hospital this PM to see whether I had an imminent appointment with a Rheumatologist - appointment yes, imminent no, beginning of September!!! So Chertsey here I come. I will be staying the week-end and taking my motorhome to the Chertsey Caravan site which is only a short walk from the hospital.

[PMRpro Ambassador in reply to Heather270240]

Ah yes - know it well!!!! Campsites are so useful for hospital visits

[Celtic PMRGCAuk volunteer in reply to Heather270240]

Heather, the fatigue, the nausea, jaw claudication and lightheadness were all symptoms for me - so like symptoms there for us both. As for the numbness down your left side, that was not something I experienced. As PMRpto has said, Rod Hughes doesn’t shy away from thinking outside the box, so I will be interested in hearing what he makes of the numbness. A different problem altogether, perhaps?

[Heather270240]

I will certainly be interested to hear what he says about the numbness. I have had MRI, CT and PET scan, and Immunology tests at King's College Hospital, and except that I am a staphylococcal carrier and they diagnosed Thrombocythemia, there was no specific reason for the numbness. Many thanks to everyone for their input. I will keep you updated.

[SheffieldJane]

It is really quite shocking isn’t it? So glad you took your destiny into your own hands. I hope everything goes well from now on. His reputation precedes him.

[Jackoh]

Yes I see Rod Hughes. I'm sure you will not be disappointed.