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Discussion Starter #1
Hi All

Just had another terrible appointment with yet another doc at my G.P surgery. His speciality was supposed to be dermatology, unfortunatley having flicked through the book of skin and nail diseases many moons ago as part of my beauty therapy training( I qualified ten years ago havent practiced for 5) I seemed to be substatialy more knowledgeable then him:eek:

I presented to this man with a facial rash , a persistantly bleeding nailfold telangictasia which he spent forty five minutes cauterising whilst i was in agony due to the fact that because of my poor circulation it takes twice as long for local anesthetic to work on my extremeties(which of course he refused to pay any attention to) , extremely itchy scaby scalp rash and a patchy scaly rash on my body and when I asked him if he felt they were interconnected with all the other bizarre symptoms I am experiencing her said " mmmmmmmm I am not sure , but I dont think so, I dont know of many diseases where joint pain , fatigue and skin conditions are interlinked".

Sorry for the sarcasm folks but even my brief foray into the world of dermatology ala the afore mentioned book has taught me that all of the above can be symptoms of connective tissue / autoimmune diseases.
:rolleyes:

I know there are some good docs out there but unfortunatley none of them practice at my surgery. I think they all have the preconceived notion that I want to be ill. I feel like shouting "on the contrary I dear doctor I want to be well !!!! but in order to do so I need to understand why all these weird and not so wonderfull things that you dont seem to be able to provide me with an explanation for are happenning to my body":(

I left the surgery this evening with a new determination to get an anwser. Which leads me to my next question can anyone recomend a good private rhuemy ?

I based in London but don't mind travelling further a field on a recommendation. I just dont feel that I am getting any anwsers from my G.P and its hard enough to try and get a prescription out of them never mind a referal.

So I feel like seeing someone privatley is the only option:( I feel like I owe it to myself to get to the bottom of this, and if they still come up with nothing ill bite the bullet, let them label me a hypochidriact and embark merrily on years of therpay :lol:

I would really like to hear from anyone who has had experiences of going private

Once a again sorry for the ranting and the long post, :blush:

xHugs to all x

The numb , singed fingered , itchy , flaky miss
 

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That sounds like an awful appointment. If you have continued skin/nail problems, then you may also want to inquire about a dermatologist referral as well. There is the Find a Doctor forum that you could search through - may be someone already recommended in there as well. If not, you may want to post there too.

Good luck! I'm from USA so of no help for the doctor referral question!
 

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Hi there,

:hugbetter: He really showed his ignorance didnt he :(

If you are thinking of going private then you won't get better than The London Lupus Centre, with world reknowned specialists, it is headed by Dr. Graham Hughes.

I think because of your presentation and some of your symptoms and the fact you did not get anywhere with the Neurologist and protein in your spinal tap then this is a very good next step. Good luck :luck:

http://www.londonlupuscentre.co.uk/

Good to see you taking some assertive action, it didnt come easy to me, but it was well worth it to finally get to the bottom of my problems.

love
Lily
 

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I have seen both Dr. Hughes and Dr. D'Cruz who are at the London Lupus Centre, London Bridge Hospital. I recommend them very highly indeed.
Dr. Hughes is older and a bit "fatherly" but very clever, a real Gentleman.
Dr. D'Cruz is also my NHS Specialist for me and my Daughter. I suppose he is in his early forties, very nice indeed, very painstaking. He was wonderful when I was really ill. He diagnosed me long before my bloods were positive.
He has also been very good with my Daughter, who had been messed around by local Docs. I can promise you he will really listen.
I hope this helps. I had to go Private initially, having been told it couldn't possibly be Lupus!!
x Lola
 

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Discussion Starter #5
Sorry Lily think you may be confusing me with someone else ive never had a spinal tap or seen a nuerologist I can just about get my G.P to take bloods. In my recent tests my ANA was negative but I tested postive for rhuematoid factor which my doc put down to a viral infection. (Some viral infection Ive had the same problems on and of for many years , must be very persistant grrrrrrr)
Do you guys think its still worth going to the lupus centre with results like that ? Not even sure that what I have is Lupus though alot of my symptoms fit both the diagnostic and the alternative criteria. Its just something I am trying to rule out.

Also wondering how much a consultation costs? As at present I am a poor social work student.

Thanks for the support though guys its nice to hear that other people have had the same experiences of getting fobed of and made to think they were losing their marbles.

x hugs x
 

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My apologies, yes I was confusing you with someone else, I have just gone back and read your seperate post where you introduced yourself :)

Did the GP indicate what he thought the skin problems were and did he prescibe anything for them?

love
Lily
 

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Hi

I paid privately to see a Dermatology Specialist as was getting nowhere with all the others. It cost me £125.00, but after my appointment with him he then took me on as an NHS patient and also referred me to a Rheumy on the NHS. It was worth the money to know that I was finally dealing with people who knew what they were doing.

Meryl
 

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Hello
I suspect you have fallen victim to the latest brilliant scheme so endearingly called 'caring closer to home' or something fatuous like that, which means in practice saving money and fobbing patients off with half baked 'experts', GPwSI, GPs with Special Interests.

St Thomas' Lupus Trust organised an all day seminar for GPs in the London area about cutaneous lupus. I think they sent out a couple of hundred invites but they only got half a dozen acceptances
I fear that when you accepted to be seen by one of these you might have forfeited your right to see a consultant but perhaps I have misunderstood how it works.

I would try to get a private consultation with a consultant dermatologist who also works at a NHS hospital, such as St John's which is the largest dermatology unit in the UK and associated with St Thomas'. There is also King's College London

Dermatology Consultants, Dermatology Specialists, at Private London Hospital - London Bridge Hospital

I'll have to finish this later because I haven't got my bookmarks organised as I thought - sorry !

Back soon!
Clare
 

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Hi

This was the exact reason why I paid privately to see a Consultant. I was also referred to a GP with special interest, but I wasn't told this at the beginning, I thought I was seeing a Consultant. this GP w SI was confused with the rash I had and proceeded to take photographs of it to see if she could pin it down. I was so fed up of going backwards and forwards and that is when I decided enough was enough and I would pay myself. I did keep my appointment with this GP after I had been dx with SLE by the private Consultant as I thought it only courteous and the GP w SI's words to me were" I could have diagnosed it myself if you had given me time, but you jumped the gun didn't you by paying privately" needless to say after that comment I have never seen her since.

Meryl
 

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Miseryblue
Out of interest how much did it cost you to go private? Did you have to travel far. I am not having much joy in getting a frim diagnose and would consider it.

TIA
 

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Hi Tia

It cost me £125.00 for the consultation and I only had to travel about 8 miles to the Private Hospital which is called The Alexander in Cheadle, Cheshire. It was well worth it as I was treated so different and I would recommend it to anyone who is struggling with a dx

Love

Meryl
 

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It doesn't sounds as expensive as I thought, so would also be interested in hearing of a Private Rheumy in London or Essex area. (Sorry The Miss for using your thread). I have been trying for over 4 years to get a diagnosis, thought I had one only for the Consultant to back track, and I am now back to square one.
 

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Discussion Starter #13
To anwser your question lily. He offered me no real feasable indication of what the problem was with my skin. His first reaction was that seeing I have asthma it was probably dermatistis(Strange as the rash on my body scalp and face are all very different in appearance.

I have had the itchy raised plaques on my scalp on and of since childhood and they were diagnosed as psoriasis when they first appeared when I was about 8 years old, but only after my mother spent 20 minutes combing through my hair in the docs surgery to prove to him i didnt have lice.

They facial rash appeared about a year ago it comes and goes and varies in colour from light pink to a dusky pink sometimes with small spots and is concentrated on my cheeks and the bridge of my nose.

The other rash is on my upper arms and appears in small flat scaly patches which vary from the size of a pea to the size of a playing card and become red when my skin is wet.

When I pointed this out to the doc I saw yesterday he then decided to tell me that these where a yeast infection which he then proceeded to provide me with various steroid creams for (arnt yest infections treated with anti-fungal creams???) In any case what I deduced from that shambles of an appointment was that actually he didnt have a clue !!!!!

To be honest I dont think he really had very much specialist dermatological knowledge at all he is just a G.P which other G.P's in the surgery advise clients to see when they have skin complaints because its an area of interest to him.

If his lack of any sort of real diagnosis wasnt enough proof of that then the mess he has made of my finger most definatley is ! Funny as he was more interested in preserving the aesthetic value of my nail fold then questioning why this problem was occuring in the first place.

A friend of mine has recomended a rhuematologist called Dr Irani who is a consultant and Ashford and St Peters. Has anyone ever seen him or know anyone who has? Apparently he has an interest in connective tissues disorders.

Will probably try and see a private dermatologist as well while I am at it because even though I cant really afford, I have a sinking sensation I wont get anywhere fast with the NHS. Thanks for the link Claire I will check it out asap.

I really dont want to G.P bash as I have had some good ones in the past. I dont know about you all but it seems that in my case anyhow they have only ever made when firm diagnosis which was Post traumatic stress disorder and depression following the death of my then partner in a car accident 4 years ago, and boy sticking to it. It seems that when ever I go to the G.P's and they look at my notes the first response I get is "it may well be your depression". This really gets my back up because having previously experienced severe depression, I am pretty sure I would know if I was depressed. It appears that ss soon as there is a history of any remotley psychological its easier to just pin anything on that no matter how bizarre, but maybe that is just my experience?


Once again a really long post sorry guys but it seems like many of you have had the same difficult experiences. Can not tell you how good it is to be able to disscuss these with people who understand.

xhugsx
 

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Oh,my gosh!You sound just like me:rotfl: I'm in the same situation and can totally sympathise.I'm also considering a private appointment.
Good luck!let me know how you get on,:)
julsie
 

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Discussion Starter #15
Will do Julsie just need to build up the courage to ring and make an appointment first lol. After yesterdays fiasco I am begining to feel like I never want to see another Doctor again, I get so worked up whenever I have to go simply because I know the sort of response I am going to get. My friend has told me several times to move practices but I am reluctant because it takes so long for you notes to follow and I keep thinking everytime I have to go that maybe they will finaly piece it all together and get to the bottom of this...... wishfull thinking on my part me thinks !!!
 

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The Miss - I think you're right on! Many have experienced that here...

Best of luck at the next doctor appointment. The thing about giving up on all doctors (as tempting as that is after such a horrible appointment) is that then you're giving up on yourself. So you have to do just what you're doing... keeping on!

Take care - hope you've found a good one!
 

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Discussion Starter #17
ARRRRRRRRRRRRRRRRR Have just been researching the private rhuemy I wanted to see and dermatologists as suggested in your posts and have just learned that I need to get my G.P to write me a referal, I didnt realise that this was they way it worked thought you just paid and went :-(.

Oh well there goes that idea, I dont think they wouldnt even bother to write the letter. When I got my last bloods back the G.P said he would retest my rhuematoid factor (it was weak positive in last test)in a couple of months and do further investigations IF!!!!!! he thought it was necessary, he even wrote the bloods form out for me (probably so I wouldnt come back any time soon lol).

Looks like I am back to waiting and a wondering and swallowing pain killers and NSAID'S and omeprazole for the forseable future. Bizarre way to treat his expert diagnosis of depression , chronic fatigue syndrome and yeast infections if you ask me lol lol lol.
 

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I am pretty sure you don't need a GP referral for the London Lupus Centre.

:)
Clare
 

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If it is Dr. Hughes or Dr. D'Cruz they are both well used to GPS writing sarcastic referrals,making out you are nuts. This didn't happen to me but I know many whose GPs have written really nasty notes which neither Dr. Hughes nor Dr. D'Cruz are prejudiced by. They both know how much some of us get mistreated.
So if a referral is needed and your Dr. writes a nasty one it is not the end of the world.
x Lola
 

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Discussion Starter #20
You guys are all so knowledgeable and supportive and such a great help !!!:)

Having woke up this morning in agony again!!! My knees ankles and fingers and shoulders are ohh so stiff and sore I know I need to get this all sorted out.

I am gonna wait a couple of weeks and go back to the G.P and ask them to refer to a rhuemy straight out.:eek:

If I remeber correctly there is one good lady G.P who was really helpfull when I had PTSD and probs with my feet and was only to happy to refer me so I could get some help so Ill try and get an appoinment with her though she is usually completely full booked:sad: and if I dont get any joy then I am changing doctors !!!

Got to do something even my partner who is usually really supportive and understanding about the fact that I am always ill , is begining to question my sanity.:(

In the mean time I am off to see an optalmologist with my ever degenerating vision it may not have been a white christmas here in England but I have a permanent blizzard in my vision :rotfl:

Will keep you posted of any developments

xhugsx
 
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