SLE & APLS 😢

[Kokica]

Hi all,

I'm quite angry, confused and lost. Within last three months, I ended up with various diagnoses, finally ending up with both SLE and APLS. I'm just over 60 so likely to be less affected than young patients. Nevertheless, it is still worrying me. I'm not sure to be worried or ignore it; to do something to help myself and if so, what? I'm afraid that I will allow this to take my 'head space' over and feel sorry for myself, but then again, am I making too much of this and all is really well... most of the time. My eyesight is getting more blurred, I'm forgetting things, I'm dropping things. I re entry left my house keys in a taxi - never done that before! My MRI scan showed a small vessel infarct. Intellectually I understand what that means, emotionally I'm petrified. I've recently stopped working, mostly due to realising I was not as 'sharp' as I have been. So that is a HUGE change. How do others cope? Is there a group in london which meets? Thank you

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

I am sorry for the delay in replying to you.

Your emotions are "normal" and you have every rights to feel as you do. Your age is immaterial. You deserve and need as much care and empathy as anyone else. A diagnosis of SLE and the antiphospholipid antibody (Hughes) syndrome is also common: I have both.

I do not know where you live, but regardless, you need to see a lupus specialist as not all rheumatologists are expert in lupus. You need time to adapt to the diagnosis and what it means. The good news is that today, diagnosis and treatment is much better than say 50 years ago. Many patients even come off all drugs and there is every good reason to be hopeful.

Having said that, you are in an understandable state of shock and I am sure you will have lots of questions for your doctor. When using the internet, there are many websites with information that is alarming and frankly, wrong. If it costs money - avoid it! Only go to websites after ensuring they offer up to date information. The rule of thumb is to avoid articles that are more than 5 years old.

You are rightly concerned about the physical aspects of your conditions and I am sorry to read about these physical changes.

We offer free information and free online psychological support.This is not "feeling sorry for yourself" but a process of accommodation to what is happening. Having to stop working is also a tremendous loss - and as with all losses (of which you have many), all of this needs processing psychologically.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[Kokica in reply to lupus-support1]

Hi Ros,

I'm in london and Prof Vyse (Guy's) is consultant I see. He's been very, very kind as has my GP. I'm psychotherapist but feel that I need to speak with someone more 'in tune' with this area than general therapeutic support. I will be joining group as I need to speak with someone I can be 'scared' with. There's additional angst I'm feeling and that is connected to my daughter who has Hughes and had a full blown stroke when she was only 30. I now feel even more guilty that this came from me and my family. Anyway, many thanks for advice/suggestion

Kind regards

K

[lupus-support1 Administrator in reply to Kokica]

Dear Kokica,

I will contact you via the more private message service later.

With good wishes,

Ros

[lupus-support1 Administrator in reply to Kokica]

You should have received a message from me via the LuPUS Message Board, which is more private.

With good wishes,

Ros

[Kokica in reply to lupus-support1]

Can't log in, as it won't accept DoB info. I tried all versions, alpha, alpha numeric, numeric and no joy. Any ideas?

[lupus-support1 Administrator in reply to Kokica]

DOB: use this format: nn-nn-nnnn where n=number e.g.

03-03-1989

You must use the - separator.

Or send me your details:

Full name

Email

Location

DOB

Ros