Any help with finding a lupus specialist in South Wales Please (I'm in Bridgend)

[welshie2010]

Hi I am in a living nightmare at the moment and I really need a doctors help with knowledge of lupus as after plenty of research and it actually being mentioned as a possibility since I have been ill this time and in the past I really need some answers and a diagnosis.

I had glandular fever at the age of 14 and really suffered badly for a year, I did not attend school in that time I was literally bed ridden, couldn't swallow(even struggled soups and liquids) and once I was out of bed my energy levels were ridiculously low and I felt incapable of doing anything. Ever since I got over my glandular fever I have always been forever picking up any cough, cold, sickness, bugs...absolutely anything that goes around. As a teenager I also suffered with very painful joints and I was also diagnosed with livedo reticularis, I still suffer from this and it isn't always heat change like they say that causes it. In recent years I have had an operation on both my ear and nose which I feel is unrelated to this and like I said forever picking up any illnesses going around. For the past 6 months or so I have had very noticeable very red blotchy rashes spreading across my chest and more recently spreading up my neck and also around the back of my neck. They don't hurt but in the past few weeks whenever this rash appears it has a heat coming from it and it sometimes has small spots appear underneath where it has appeared.

Just over 7 weeks ago I was admitted to hospital with suspected meningitis, my observations were all over the place,my symptoms were severe migraine with pins and needles and also pins and needles sensation at the back of the headand in my hands for no apparent reasons, nausea, , a rash which later got diagnosed as possible discoed eczema or it could be something to do possible lupus which was being investigated at the time. The night I got admitted into hospital my livedo was the worst I had ever seen it by a long shot, it literally looked like it was tattooed from my toes up to my thighs in the deepest, darkest black/purple pen somebody could use. This did not start to reduce for a good 6/7 hours. (I am used to my livedo flaring up in different ways but never in over 12 years have I seen it like it was that night) I was kept in hospital for 9 days having 2 CT scans (1 with dye), 1 chest x-ray initially in A&E and 2 lumbar punctures none of which showed anything significant. However the only pain control that eased the headaches and pain of the (discoed eczema) was oramorph, nothing else touched it. 4 days in to my stay at the hospital I complained over a sever pain spreading from my neck, through my right shoulder and arm, I was in tears at 1am with this and the on-call doctor was not bothered as it was not my left arm and prescribed me a sleeping tablet.

I was discharged after 9 days as an inpatient to have a fielding eye test as an outpatient and be seen further as an outpatient even though I was in no less pain (without the oramorph) than when I was admitted. I was discharged in the Thursday and on the Saturday evening I woke up in the night with a similar to pain in my arm to what I had experienced previously but ALOT worse, I went in the spare room crying my eyes out not wanting to wake my partner, I was trying to stretch my arm, exercise it, used hot and cool soothing but nothing helped. I was determined not to ring out of hours as I was afraid of being re-admitted. I did not sleep that night and the pain did seem to ease in the day but not leave completely. However exactly the same happened on the Sunday night only worse again, in-fact so much worse I actually did ring out of hours at 4:15am as I really felt something was wrong. The doctor on the phone advised me to take the codeine that been prescribed and try my best to sleep. The codeine didn't seem to make a difference and again had no sleep. I went to see my GP first thing Monday morning and he straight away could see how much pain I was in he thought it was a suspected trapped nerve but also found a lump on the back of my neck which he thought and hoped was muscles spasming. Three weeks after I went to see my GP here I am still on oramorph that he prescribed on that first visit and gabapenthin. The GP reffered me for an urgent scan but even still after 14 days my urgent referral still hasn't left the receptionist desk to be prioritised by a GP. Last week I decided I had, had enough and asked my GP to make a private referral, I went for my first consultation with a neurosurgeon yesterday which was followed by an MRI and I now go back next week to see what the results tell him and for his course of action. But under no uncertain circumstances is he ay doubt that the rashes, hot sweats etc have no link at-all to the pain in the arm, shoulder, neck area. I really am clutching at straws here as I feel that nobody is listening to the range of symptoms I have, and after researching lupus I really do feel this is a strong possibility when you bring everything together, maybe even including the glandular fever?

I'm sorry to go on but I really need to be in contact with somebody who knows lupus inside out and if they were to look at my whole history and not just bits here and there if that is actually what I am suffering from?? I really cant stress the hot sweats are unbearable I am waking up in the middle of the night drenched, we were in the car the other day and my partner had to notify me I was literally dripping with sweat from the face, I mean I carry a flannel around with me, I have constant headaches, my livedo is now worse than ever before and I have never felt as low I do right now I also have had no appetite since I was admitted into hospital.

I am only 26 and about to (hopefully start my second year of uni) but right now I am in to much pain, I don't have the constant grip ability to drive, write etc and my wrist really does flare up when I use it to much. If anybody could help I would be so grateful.

Thankyou

[janiceray]

Hi

I am sorry that you are going though all this at a young age.Are you under a rhmy specialist.!!!

There is a Doctor Nash at the Heath.which some of the people i know are under and have had good reports.

South Wales has a Lupus group.that meet on a regular basis and Lupus U/K have some leaflets you could ask for.

sorry i cannot help but thought you might like to know the above.

Take care

Jan

[helentad]

Hi, sorry you are going through all this. I too had glandular fever age 14 and suffered like you. I was told that it can be a catalyst for lupus. I have a lump on the back of my neck/shoulders which I was hospitalised with first time it happened. It can swell up really really big and just as quickly go back down, no treatment other than pain meds. I was told it was Buffalo hump.

St Thomas in London has the Louise Coutes Lupus Center which I was referred to and seen by Dr Cruz although a few different doctors are available. They are the best in UK with other good soecialists around the country. Basic specialist at a local hospital would be a rheumatologist who can diagnose you. I'm in North Wales and I see Prof Moots at the Royal Liverpool. Prof Bruce I believe is very good and is in Manchester. I also believe a new unit has opened in Llandudno North Wales. Sorry I don't know of any in your area but St Thomas will see anybody from around UK.

[helentad]

You could ask your GP to put you on Hydroxychloroquin. Which is one of the main drugs which is used to treat Lupus. Its an anti malarial but it works. Two different types are available one is Quinoric but lots of SLE sufferers have bad reactions with that one so Plaquenil is a better option. Hope something I have said helps, I also hope you find some relief soon.

[willowwag]

Hi welshie, i have just seen your post i know it was a few months ago you posted, ive had lupus for about 10 yrs, i live just outside bridgend llantrisant, i have a wounderfull rhuemy. Her name is ceryl rhys dillon, she is at the royal glamorgan hospital...if anyone will get to the bottom of things she will, she may even do bridgend..ask your gp to refer you to her...im 36 now and i feel your pain, when you said you go and cry in pain and try and hide it from your partner, i used to do that my hubbys wounderfull and tells them in the hospital whats wrong etc, as sometimes i end up i A&E and im totally zombified due to pain. Feel free to inbox me if you want a chat.....

[Tara1_]

hello.

I am also from South Wales but live right on the coast in Ceredigion. I am having no luck either seeing any doctors about it. The worst part is that my GP said it was acid reflux. I couldn't believe that any doctors would be that bad but sadly it's true. I have had it for a long time too. The butterfly effect (mess) on my face is dreadful let alone my knee, face, whole neck and head, internal damage etc. I have every symptom except psychosis and seizures. Thankfully.

If anyone does have any specialist that would do a video conference call with me then please let me know.

I really will appreciate it more than you will ever know.

I am female and 38yrs old so am of legal age to do that as I'm not sure if there are age rules etc.

Thank you in advance for any help you can give/be.