[julsie]

After a very stressful drive to London,arrived at St.Thomas's 10mins late.
Not kept waiting very long and went in to see Dr C.She seemed very nice but I also got the impression she had already made her mind up.My doctor had written a lengthy letter detailing how no other specialist had found anything yet and a whole page!about how he felt my depression(and implied that I had refused treatment!which is not true )was clouding the diagnosis and that most of my symptoms were down to that.She wasn't that interested in all the problems I had written down and said that she didn't think it was due to an autoimmune disorder.She said that if it was lupus it would have shown in the bloods by now,as I have been feeling worse since the age of 15.She saw the photo's of my skin and said that I needed a good dermatologist.....you think?:wall: I've only been trying to get one for over twenty years!yesterday the skin was so tight on my hands,I couldn't bend them without the skin ripping.She mentioned a skin biopsy,but said that they could no longer sort that out and I would have to go back to G.P.
My husband is gutted,as was I ,as I felt this was my last chance to sort this out.I did the worst thing and started crying because I was so frustrated,only adding to the depression thing.
My first reaction was to jump off a cliff because I don't want to just 'exist' and feel like the living dead,but I would never leave my family.I am going to change my G.P and request to see my notes and what he has been writing about me.Then I am going to try antidepressants,but I can't see them stopping the joint pain,fatigue,anaemia,hands turning black etc.I cannot believe that not one doctor has offered a basic exercise tolerance test,or any pulmonary function tests,but I always have such a problem suggesting this to a consultant
My poor old husband,he just wanted 'me' back a little bit.
The doctor ordered some bloods ,but they were the same ones the rheumy had already done,so no guesses what the results will be.Nevermind,I will keep trying,
Julsie

 

[jane1]

Oh dear...im sorry it didnt go well.....do you have a apt to go back after bloods were taken?...they may show something this time?......or she may have said to your gp do a dermy refferral?.......i dont know what to say hun.........im sure someone with more experience will pop soon to offer you advise as to where to go now...jane

 

[Lily]

How disappointing and frustrating for you Julsie!

I do hope that she mentions you need a Dermatology appt in the letter to your GP If she doesnt then I think I would write to her (considering your GP will probably refuse another referral) and explain what's going on. I dont know about over there but here if a specialist recommends something then the GP usually has to jump through the hoop.

Stay strong.............and yes another GP won't go astray nor will trying the antidepressants, so many of us need them anyway and it's one way to demonstrate that we have gone along with that and it hasnt taken any of the other problems away!

love
Lily

 

[greenhaggis]

Hi Julsie,

Sorry things did not turn out the way you wanted!
I agree with Lily that you need Dr C to explain that she reccommends a Dermotologist appointment. The local Primary Care Trusts (PCT)do control the GPs greatly on refferals.

Take care!

Lesley

 

[karen.w.]

((((((julsie))))))

I am so sorry you had a disappointing appointment :sad: I'm not surprised you are feeling so disheartened!you had pinned all your hopes on this appointment!

I also agree with lilys good advice,thats the way forward now julsie,please don't give up.

sending you lot's of positive,healing hugs :there: :hug:
I hope you feel a little better today
take care
karen x

 

[julsie]

thank you ,everyone,for all the replies,it means so much.I really have been down since that appointment,
Julsie

 

[Katharine]

Hi Julsie,

All I can say is "hang in there"

I had a similar appointment with my rheumy in the beginning. In fact here you don't get a referral. My GP told me to go and see the rheumy and I rang and made the appointment! That's how it goes over here. The problem is that with no GP's letter and no bloods backing up what I was saying I did have a hard time getting anything through to her as she was very bloods oriented.

She did, however, do the same as your rheumy and she told me to go and see a dermy for a skin biopsy. That biospy revealed lupus and suddenly I was there and being treated.

I had been ill for many years before finally getting a result. In some ways the docs were slow - basicallly the tests GPs do are just not specific enough - and in some ways I could say that it was my "fault". I simply gave up when the GP said there's nothing wrong in your bloods. I would then go away for another few months suffering in silence before I would try again. It wasn't helped by my ex being totally non supportive.

By the time 2007 came I had met my husband who is wonderfully supportive and I had been experienceing worsening problems for a year. I got fed up and made a New Year's resolution. I walked into my Gps office and told him that I had decided to be his most annoying patient of the year and that I wouldn't give up until I had an answer. He took me seriously. He himself suspected lupus and sent me off to the rheumy again. In February a nice butterfly rash appeared which my GP photographed, that in turn pushed the dermy to test for lupus and hey presto I got there!!

My rheumy (the same one) is now fantastic. I don't think that it was a case of her not believing me but more a case of wanting to see those bloods come back positive. I think she has learned a lot from this and hopefully she'll be more open when others come to her later.

Anyway, just hang in there, don't give up, pester and pester until something gives - and yes, if you don't have a supportive GP - change and be determined. Look back to the person you were - this is not your normal state and you shouldn't just lay down and accept it.

:hug:
Katharine

 

[julsie]

Thanks Katharine,
I think that is why it's so hard,to stand up for yourself.In the consulting room,I felt like I had given up.I feel weak mentally and physically,but inside my head this voice was screaming'come on!you know this isn't right'but I found it impossible to contradict a consultant as they are supposed to be the experts.My husband was angry because he couldn't come in and tell her how poorly I'd been as he was looking after the kids.I just think'well ,maybe they're right if nothing has shown up in the bloods',but then I go home and can't hold anything because my joints hurt too much and my knees are agony just from walking to the hospital and it all feels so ridiculous.Oh,well,I will keep on nagging,
Julsie

 

[halfpintfl]

Hi Julsie, I just wanted you to know that you are not alone, we all do care about you and will support you in any way that we can. I had my fingers
crossed for you so long that I think they are permanently staying that way. A dx is so very hard to get and you may go thru several dr.s b/4 you find a good one. Be A Pest, and you will get there. The sad thing is that no one will worry about your health as much as you. ((((hugs))))

 

[lin]

i am so sorry Julsie, things didnt go well either, and i agree with Lily too

big hugs Lin xx

 

[julsie]

thanks for thinking of me Halfpint and Lin,
Julsie