[pollianna]

Hi all, I was under the impression that I had just been diagnosed but now I am not so sure. for those who ggo to the lupus unit London, could you help? I saw Dr d'cruz a couple of weeks ago. He told me he will prescribe me antimalarials. He saw my butterfly rash and commented on it (often it's more of a blush to be honest) He took 21 further blood tests and every symptom I said, he nodded and said "consistent with lupus". I took this to mean he had definately diagnosed me but he didn't say you have A or B type lupus for eg. I have another appointment on 26th feb. Have I been diagnosed ? Ohh I should add, the bloods he took in August showed autoimmune activity

 

[Joandublin]

Hi

It sounds to me like you have not yet received a 'formal' diagnosis but that it appears like things are heading this way. I remember my consultant saying to me 'we are putting the picture together and things are pointing in a certain direction'. I didnt receive a formal diagnosis until about six months later.

Sometimes it takes a while to explore and uncover evidence for this disease. Its great that you are in good hands and that you are being treated to see if you have any response to your 'autoimmune activity'.

In my humble opinion I would say that they are leaning towards this as a real possiblity but are not prepared to make a call on it right now. In the meantime, as you have this window of opportunity, please make sure you sort out things like life assurance as it is very difficult and sometimes impossible to get life assurance with a firm diagnosis of Lupus.

Let us know how you get on with your next appointments.

Hope this helps
Joan:rose:

 

[pollianna]

Thank you Joan. I must say it's all very waring. I know I have Lupus. I knew years ago there was something going on. I even asked them to look for Lupus but they couldn't find it until I got to dr D'Cruz. Not sure where I am now the thought struck me. My shimmer? test was bone dry. I have every text book symptom . I doubt very much if I will ever get life assurance, already been declined based solely on my symptoms. Long hard road eah?

 

[Joandublin]

Hang in there. A long hard road is a very good description. I remember trying to get life assurance before my diagnosis and there was a query because of the fact that I was even seeing a Rheumatologist.

Based on my symptoms alone I couldnt get a straight answer from the company because I didnt fit into the neat little 'boxes' they had on their forms. I gave up trying. Looking back on it I wish I had pushed things harder but c'est la vie. After all, they hold all the cards...

If anyone out there is going through a process of diagnosis - get your legal affairs in order NOW! Good Advice!

I reckon from what you wrote that the 26th Feb will be a significant day for you. I hope you have a nice evening planned after that. Take a deep breath and get yourself settled in for a roller coaster of a journey! We are here for you all the way.

Much Love
Joan:rose:

 

[LolaLola]

Dr. D'Cruz does not say things lightly, so I would feel you are well on your way to a diagnosis. He is a good Doctor, most efficient and kind, if you feel a bit confused do ask him exactly what the state of play is. He has told me that even if he seems really busy on a day we see him, if we have ANY questions to make sure we ask them. So don't feel shy to do this. He likes patients to be well informed and empowered.
Best Wishes to you,
X Lola

 

[pollianna]

thanks Lola, I'm counting the days till I see him xx

 

[onetay]

Pollianna,
I live in the USA so can't really tell you about the doctor sorry. It does sound like they are heading that direction for you. It is bothering you, you should call and ask if you can talk to someone for clarification. It never hurts to ask question when it is your health. I would also say he took all the labs to compare to the last labs to see if there is any change (I have found that is something you will need a lot of blood they love to take it lol).
Tammy

 

[pollianna]

thanks Tammy, got a letter through that was sent to my GP, diagnosis, possible lupus like illness. He ( Lupus specialist) commented to my GP that my ana is positive as is my rheumatoid factor. I had a definate malar rash ans he added "strikingly the schimmers test was bone dry"

Yeah I reckon he has diagnosed me. I guess he is being cautious and tactful as the Doctor he's writing too sent him a note saying he had ruled out Lupus, I had a negative ana and negative Rheumatoid factor but that I insisted on seeing him anyways. I knew I should've gone into medicine :lol: Dr D'Cruz didn't say he was giving me antimalarials in the letter but he told me he was.

I had the malar rash last night, am in fear of loosing the use of my legs as my immune system seems to like to break them down. If I haven't got Lupus I'll be a monkeys uncle

 

[LolaLola]

Pollianna, A bone dry Shirmers test can be worth its weight in gold diagnostically, it is very significant.
Yes, I feel you know where this is going. Dr. D'Cruz is very tactful at getting GPs to work along with him. It is a valuable skill especially when they have already made theirselves look silly.
Not long now for your next appointment.
x Lola

 

[pollianna]

Ohh Lolalola, I believe my GP's exact words were, "yes you can go see a rheumatologist but he will only be able to give you pain killers and I can do that"

Dr D'Cruz did seem extremely shoked that the schimmers test was bone dry. I am still counting the days, can't wait to see him. The further back I look, I think the Lupus symptoms started further and further back. I just hope my organs aren't involved. Musn't dwell on that tho eah?

Thanks guys for your amazing support