[Viridian]

I'd like to say, first of all, thank you to everyone here (especially Clare.T.), for your advice and support when I first came on here, and also while I've been 'stalking' :lol: since!
I haven't been on in a while, but I've been watching and reading, and it has given me so much strength. So, I've decided to come back.
I dont know if any of you remember, but I had/have a bunch of problems, and I was going to see a rheumy. Well, what a waste of time and money that was!
He was off with me from the go. Had I ever had white fingers? Erm, no. But they do go VERY red and mottled, sometimes purple, itching and pains. (dismissed) Had I ever been to the doctor for red eye? No, but I do get slightly itchy eyes, 'styes', blurred vision, etc. (dismissed). Took a look at the rashes and said my face doesn't look like lupus because it's in the nasolabial folds (take a look at my pics in my sig - they've never been red, even on that day), the one on my side looks like ringworm and the other sebohorric dermatitis.
Checked my legs, and I explained they hadn't been hurting for a couple of days. I think I must have started sighing every time he said 'Does this hurt?' and I said 'no'! (although I dont know whether in lupus your joints are supposed to hurt all the time, but anyway he dismissed this too). And, of course, my ANA was neg.
All of this boiled down to me getting quite panicky/muddled, and him saying it's not lupus. Even when I tried to explain that my face 'flares' up in the sun, heat, and sometimes by itself, he just replied 'Well, I'm not giving out steroids!' (I dont want steroids, I react badly to prednisone. I just want to find out what's wrong!).
Anyway, afterwards I cried for a bit, and went into a time of 'I think I must be a hypochondriac'. Then I started to get worse again recently, and realised I have to do something about this.
I'm due for a CT scan on friday, dermatologists on nov 5th and good old London Lupus clinic on nov 25th. (tried to ask GP for St.Thomas but she's said that the health board wouldn't allow it through NHS because of my bloods).
I've been on antifungals for a month (just in case it is ringworm) and they did nothing, and I'm waiting on results for another ESR (last one was only 19) and lupus anticoagulant (GP says ANA cant be repeated because I had one done in August and it wouldn't have changed since then.). And have now come off the pill after another attack on lost vision on the right-hand sight, with numbness/weakness on right hand side of face and body. GP thinks it could be either a clot (but she thinks this is very unlikely) or hemiplegic migraine (without headache).
I just wanted to share all of this for two reasons:
1) To help myself get back into all of this and get my confidence back.
2) To say to everyone else who is worried/struggling at the moment. Push! You know if something is wrong, and you deserve to be better. Take any knock back with a deep breath, and carry on. Personally, I dont care what I'm diagnosed with at the moment, I just want to know, and be treated so I can get my life back. You deserve the same.


Sorry about the long post!
Feel free to look at my pics in my sig. They may or may not be relevant to you!



-Viridian

 

[alisiajo]

Is there another rhuematologist in the area? Mine is amazing so i cant imagine what you'e going throug. I dont really know symptoms of Discoid Lupus but i know the way the thought to test me for lupus was my "butterfly rash" a rash that goes across the cheeks and nose. I havent had problems with rashes since fist diagnosis except for ones i was outside trying to tan (i have very fair skin) and i got blisters on my arms. They went away very quickly though. I dont think he should just be dismising your fears. I dont think the joint pain goes along with Discoid lupus, but dont quote me on that. I know whith my SLE i couldnt walk up or down stairs as my joints hurt so bad. He prescribed Prednisone and w/in a couple days everything was better. I hope you find something and it all works out.

 

[Aggie69]

Thanks for the info and photos Viridian. After being dismissed by countless 'specialists' I was beginning to feel like a hypochondriac too, however, posts like yours are giving me the determination to carry on fighting. I KNOW there is something wrong and I'm not being fobbed off anymore. Hope you get sorted soon. x

 

[kiaratrak]

Good luck Viridian - don't give up.....

 

[Katharine]

Hello there,

I'm sorry to hear that things have been so bad for you and that things have been so easily dismissed in general.

I think you have done right in getting an appointment at the LLC. Hopefully you will be able to get some answers.

I remember when I went first to my rheumy, I said to her "I don't expect miracles and I know you may not have any answers straight away but I know something is wrong and I would like you to start by listening to me properly so that we can find out together what it is". Of course I said that in French - maybe it sounded less aggressive in French :lol: but it was definitely the same message.

I also had the negative bloods problem and even with that rheumy (who did keep her word and always listen) it took a while to get a diagnosis. Thankfully she is now wonderful about treatment and is "available" when needed.

I know you won't give up! You can't afford to give up! I just really hope that some answers will be forthcoming sooner rather than later.

You could ask if it wouldn't be worthwhile doing a skin biopsy. That can prove very useful when bloods are negative. Mine was taken from an unaffected and unexposed area of skin (my stomach).

hugs to you and hang in there! :hug:
Katharine

 

[Viridian]

Thank you everyone!
:grouphug2:
The support is so great on this forum!


alisiajo - There may be another rheumatologist around here (even though at the moment they are few and far between), but I decided instead to go for broke at the London clinic, because I'm hoping if it isn't SLE or DLE or any other auto-immune related 'thing', that he can at least point me in the right direction.

Katharine - When I see my dermatologist on nov 5th, I'm hoping they'll do a skin biopsy but I hear the wait is long for results and by the time I have an app for a biopsy, and have the results, it'll be too late to take to london with me (and I dont think they do skin biopsies in the London clinic :shrug. Still going to ask for them though, better late than never!

Aggie69 - I hope things are being sorted with you too! It can be so disheartening when you're constantly being knocked back (by blood test results or 'professional' people!), and when noone can seem to offer an alternative. Dont get me wrong, I'm still scared about going to London and being told 'why did you waste your money coming here?!', but you have to find the strength to see past that lack of self-esteem and do what your heart tells you you should do. Peoples support on here (not just of me but for others in this situation), and their experiences have helped so much with that.I'm glad I could pass a little of that onto you! Hold in there and dont doubt yourself! :hug: :flowery:


- Viridian

 

[LolaLola]

Dear Viridian,
Wishing you well for the London Lupus Centre.
You have had a bad time so far, but that is something many of us can identify with. We are all here to help you keep strong. Just in case it helps, negative bloods do NOT mean you are less ill than other people. I was really bad before my bloods became positive and had already had to start on treatment. Sometimes, with neg. bloods you can feel as if you are not as bad as other people. That is far from the case in my experience.
x Lola

 

[marymackay]

Keep at It

Hi Viridian,

thanks for your post. I've been online here since early last year, and find tremendous support from all too.

From all doctors /specialists I've seen for many years, I just flew down and back to see another on Saturday- only half an hour after over an hour's flight. Not really enough time for my extremely complicated medical history. There was not time to talk about lupus or APS, but he was actually personable, interested(I hope) not barking questions like all others(who would never allow me to ask one question; no time anyway).

So I feel for you, and applaud your push-push push. :wink2:Sorry it seems to be the only way. I hope the new place will help you to find the d/x you need.
Cheers. marymac

 

[ALWIN]

Hello Viridian

I hope you get some answers from your appointment in London.

Just wanted to reassure you that i think it very, very unlikely anybody at the clinic will ask you why 'wasted your money coming here'.

Like many I had similar experiences with negative attitudes and rude people skills from some doctors before I went down to London. Hurts, doesn't it? I returned with diagnoses for 3 different, but related conditions, and treatment to help. I then got registered with a more local NHS rheumy with experience of SLE, etc. If i remember I did a google search for rheumatologists and SLE in my area and a list of doctors names came came up with the hospital they were at listed alongside. One of the names matched that of a doctor recommended by a person on this site who had sent me a PM. i then asked my gp to refer me to that doctor in the future so I do not have to pay privately any more.

Good luck.



So - good luck, and well done for continuing.

 

[greenhaggis]

Good luck with your appoitment in London.

Remember to take copy of those pictures to show them (also take them to the Dermatologists).

Hugs,

Lesley

 

[Viridian]

Thanks once again guys!
Lola - How long did it take for your bloods to show? Just wondering because I've now traced it back to about 8/9 years ago that I got my facial redness, and more obvious fatigue/pains, but probably more like 15 yrs for teenage migraines, growing pains, etc. Wouldn't something be showing by now?

I will definitely remember to take my pics with me (and to the dermy), and a whole list of 'symptoms' (because I always go to jelly/cant think straight when I'm talking to someone!). Also, my last few lots of blood results just in case. You never know, he might see something that knowone else does.

- Viridian

 

[LolaLola]

Viridian, I am afraid you won't like this answer. It took approx. 20 years from first symptoms to positive bloods! I had tested positive for APS in pregnancy but the Docs did not know what that meant.

If you see Dr. D'C. in London he will be most sympathetic. It was him who finally diagnosed me. After years of ill health he knew within three weeks and was able to help. When the bloods became positive it was no longer an issue as I was being treated anyway. Funny thing though, it did make me feel "better" somehow. I remember I celebrated by going out and buying a Guinea Pig. (I had gone out to buy earrings but never mind)
A small proportion of people with Lupus may never show positive which is why an enlightened Consultant will not be totally guided by bloods.

You probably don't think so but you have every reason to be hopeful of getting help.
The time before going to London can be nerve wracking, if I can help please let me know.

 

[Viridian]

Actually Lola, I think that's made me feel a bit better about going to London to be honest. I just assumed that after so much time, something would show in my bloods, and knowing about your situation means it could still be diagnosed as SLE. Don't get me wrong, I dont want SLE, but as I have said before, I want to be diagnosed with something (that's a proper diagnosis!) so I can be treated.
It is Dr. D'Cruz I'm seeing. I asked specifically for him given my situation at the moment. Lol! The email I wrote must have made them think I was mad with a whole list of stuff that may not even be relevant!
Did you have to stay in then? (you said it took three weeks to be diagnosed). I only ask because as it is we are traveling from west wales that morning, and with four children and hubbies' work to contend with, that may be a little difficult! Poor bloke will have to sit in the car with them and wait while I go in alone! *scary thought!*
Lol! That made me laugh about you buying a guinea pig! How exactly did you manage that if you were after earrings?!!
Thank you so much for your response, and your offer of help. The next 6 wks will be...tough. But I have to say, even if they turn around and say 'go home. it's nothing that we can help with', I will still be so glad I went.


Edit: forgot to say, I have been tested for APS (lupus anticoagulant) and everything was neg. Even though I have some symptoms of APs my APTT was low, not high as you'd expect in APS. I dont think I've ever been checked in pregnancy.

 

[Aggie69]

Aggie69 - I hope things are being sorted with you too! It can be so disheartening when you're constantly being knocked back (by blood test results or 'professional' people!), and when noone can seem to offer an alternative. Dont get me wrong, I'm still scared about going to London and being told 'why did you waste your money coming here?!', but you have to find the strength to see past that lack of self-esteem and do what your heart tells you you should do. Peoples support on here (not just of me but for others in this situation), and their experiences have helped so much with that.I'm glad I could pass a little of that onto you! Hold in there and dont doubt yourself! :hug: :flowery:


Thanks Viridian - everything crossed that all goes well at your forthcoming consultation. I really hope things get sorted for you.

I think I need to follow your lead and start taking photos of everything too because I sometimes don't feel believed when I mention certain symptoms eg. last time I went to the dentist for a check up I casually mentioned that I often had white patches/blood spots on my inside cheeks (then not having lupus in mind). Of course, I didn't have any at the time and he looked at me like I was neurotic and told me it was nothing to worry about. Saying that, I showed a derm when I did have them and he said exactly the same thing!! It's no wonder getting a diagnosis is such a struggle. I don't know whether I have some form of lupus or not. What I DO know it something's not right with my body and I can't carry on in limbo. I need to know what I'm dealing with.

 

[Aggie69]

Dear Viridian,
Wishing you well for the London Lupus Centre.
You have had a bad time so far, but that is something many of us can identify with. We are all here to help you keep strong. Just in case it helps, negative bloods do NOT mean you are less ill than other people. I was really bad before my bloods became positive and had already had to start on treatment. Sometimes, with neg. bloods you can feel as if you are not as bad as other people. That is far from the case in my experience.
x Lola

In the past I've had two derms mention the word lupus to me. The first was in 2005 when my hair/skin problems started (other symptoms for years before this). He did a blood test (don't know what for) which came back 'normal'. I was told that I could not have lupus with a normal result.

The word was, therefore, eradicated from memory until a second derm mentioned it June just gone and I was also diagnosed with FM. A scalp biopsy undertaken by this derm came back 'inconclusive' and I was promptly discharged from the clinic with yet more steroid cream/scalp lotion and left in limbo with no diagnosis. I didn't even get a follow up appointment to discuss the possibilty of further investigations/tests to find out what I did have.

So if I'm undertanding this correctly, 'normal'/'inconclusive' results can come back and a person could still could have lupus? If this is the case, why do so many professionals rely solely on the above methods of diagnosis? Surely they should also be looking at the patient's whole story/past medical history and piece the puzzle together? Saying that, my medical notes would take a lot of reading!!

 

[Viridian]

I think I need to follow your lead and start taking photos of everything too because I sometimes don't feel believed when I mention certain symptoms

I got so fed up of going to my gp, derm, rheumy, etc. and not seeming to have anything wrong with me! It always seems to be that when you need it the most, everything hides away!
That's why I started a photo 'diary' when things are changing, I start taking pics. Then they can see what I mean when I try to explain eg how my rash behaves. I'm not very good at explaining myself so at least this way I can just go 'there you are, that's what I mean!'.

Shame we cant take pics of the joint pain, fatigue, etc. etc!
Like you say, we just need to know what we are dealing with!

Btw, was down on holiday in your area in the :smirk: 'summer'.
i have to say, it was absolutely gorgeous!

 

[Aggie69]

I got so fed up of going to my gp, derm, rheumy, etc. and not seeming to have anything wrong with me! It always seems to be that when you need it the most, everything hides away!
That's why I started a photo 'diary' when things are changing, I start taking pics. Then they can see what I mean when I try to explain eg how my rash behaves. I'm not very good at explaining myself so at least this way I can just go 'there you are, that's what I mean!'.

Shame we cant take pics of the joint pain, fatigue, etc. etc!
Like you say, we just need to know what we are dealing with!

Btw, was down on holiday in your area in the :smirk: 'summer'.
i have to say, it was absolutely gorgeous!

I have to say that when I'm feeling particularly down, just breathing in the coast air or surveying the scenery on Dartmoor makes me feel thankful to be alive regardless of all my problems. In fact, I open up my curtains every morning to a beautiful view of the Estuary and Sound, so I'm very, very lucky. Most people who visit can't manage to see past the concrete city centre so I'm glad you enjoyed yourself.....hope you managed to catch a few days of sunshine.