[The Miss]

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

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.


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

 

[The Miss]

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

 

[The Miss]

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

 

[The Miss]

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 !!!

 

[The Miss]

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.

 

[The Miss]

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.

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

 

[The Miss]

nails, skin and what hides there in

Claire I spent ages researchingt he thing on my nail as it appeared one day and seemed to get larger over time. I came up with two very distinct possibilites

- A nailfold telangictasia (most often occuring in patients with SLE , scleroderma and dermatomyositis)

- Granuloma which if I am correct is some sort of non malignant vascular tumor (this occurs at sights of minor trauma in the body)

The doc seemed to think it was the former but then later (after he'd burned half my finger off) that it was the latter. On the grounds that it bled persistantly and very easily and of course because how dare I go and research something that was happening to my own body, present it to him and expect him to agree.Surely I was forgetting my place:rotfl: .

However had he bothered to listen he would have learned. I had had this for about two year without any problems. until I went for a manicure. The manicurists decided without asking me to hack in to with a pair of cuticle clippers when I screamed she apologised profusely saying that she thought it was a blood blister( any one in the SW London area let me know so you can avoid her like the plague). It bled for about two days non stop. Since that incident as the cuticle was damaged every so often when I washed my hands it would start bleeding for a while.

Obviously he is supposedly the expert (yeast infection my foot!!!)
but to be honest personaly I think it was more likely to have been the
a telangictasis on the basis of prior to going to sweeny tod the demon mancurist it had never bled , the shape and structure of it was more like a telangictasia (good old colour atlas of dermatology) , I never to my recollection injured that finger and I have another one developing on my other hand.:worried:

In any case the telangictasia are treated with cauterisation (i used to do this in my days as a beautician) and granuloma should be surgicaly removed ( according to the clinical journal of dermatology).

I can tell you right of fthere was nothing surgical about getting burned for 45 minutes with electric current and obviously nothing sterile either as my finger is now infected

As part of my Beauticians training we learned all about the nails and skin and how these are often the first parts of the body to show signs of systemic disease as well as what the signs of these were.

Obviously this rather important lecture was abandoned in medical training in favour of the rather more important one about "How to dissmiss what your patients tell you because hey your a doctor":lol:

Once again apologies long post full of sarcasitc remarks but hey if I am gonna be a "Chronicaly fatigued , yeast infected , granulomas hypondriact" for the forseable future I may as well have some fun with it

xhugsx

 

[The Miss]

Hey Julsie , I think we defo should ive looked at some of your posts and we seem to have alot of symptoms in common. Saw an optitican about what you call snow vision many moons ago and he said that its something to do with some sort of coating thats on the eye flaking off I think thats what he said anyway was about 13 yrs ago so cnt really remember

 

[The Miss]

:worried: Oh Redbird I am sorry to hear that you were so unwell, its a good thing you have a supportive family who were able to look out for you . I hope that now you are getting treatment that you feel better.

I am lucky because in comparison with yours, my symptoms arnt as bad. But what you have described is exactly what I fear happening in the long term if I dont get them sorted out.

I decided to take some affirmative action today and register at a new surgery. Was informed by the receptionist that the buisness of swapping G.P's within the borough is highly political and as a result have to write a letter saying why i wish to move.

Tricky task as though I wanted to get point across I didnt want to appear rude or difficult but am pretty happy with the end result and will be popping in the post box tommorrow.

Had to laugh though when I told the receptionist where I was currently registered she rolled her eyes and said "why dosent it suprise you are moving, we have had thirty patients from there request to move to our practice in the las 9 months":rotfl:

Glad I am not the only one !!!!!

Fingers x'd the change will do me and my dodgy, joints, skin and finger good