Scared

[jackjack2]

Hi all, this is the first time I have posted a blog. 4 weeks ago I suffered a stroke and whilst in hospital was also diagnosed with SLE (Lupus) and consequently have had numerous blood tests, I am having an echocardiogram this week, MRI on my spine and have been referred to a dermatologist and rheumotologist. I am feeling quite scared and isolated as after seeing my GP a few months ago before my stroke I asked him if he thought I could have Lupus and he laughed at me Has anyone else had a similar experience with their GP and also yesterday I had such pain in my wrists, fingers and palms that it made me cry and I do have quite a high pain threshold. Can anyone tell me is this normal for Lupus sufferers. Thankyou for reading

[Purpletop]

Yes, the vast majority here had similar experience with our GPs. For example, I was told it must be anxiety and stress that makes me have all these seemingly unrelated symptoms, I was told to take antidepressants, probably just to go away and leave him alone! It took me 2 years of badgering and every specialist under the sun before he finally referred me to a rheumatologist.

I'm so sorry you have had a stroke, any idea what caused it? Have they checked for APS (sticky blood or Hughes syndrome, as APS is also known) because that is one cause of stroke in patients who also exhibit lupus symptoms. It is good that you're seeing a rheumatologist, he or she will do all the necessary tests, including APS, and will start you on the right treatment. Joint pain is prevalent in lupus sufferers but can be controlled by medication, so the sooner you get to that rheumatologist, the better!

Meanwhile, you may want to take antiinflammatories for the joints (ibuprofen for example) but only if you are allowed now after the stroke - check with your consultant, don't take my word for it, I'm not a doctor! Hot water bottles are also useful.

I can imagine how scared you must be now but you are on the road to recovery now, so it can only get better! And you have this forum now, a wealth of information at your fingertips.

Take care and let us know how you get on x

[jackjack2 in reply to Purpletop]

Thank you for replying to my blog. After a CT and MRI scan they found abnormalities on my brain. I had the stroke in my sleep and woke up with weakness on my left side and my speech slurred. I am now taking aspirin. I have been taking co-codomol for 2 years for hip and back pain and using Feldene gel, which does help sometimes. Unfortunately I cannot take ibuprofen as I am a chronic asthmatic, To be honest being diagnosed with Lupus has explained alot of things that I have been suffering from. I have not been tested for APS but I will certainly discuss this when I see the Rheumotologist. Thanks again for your reply x

[MaryF]

Hi there, sorry you have had a vile time... you need your rheumatologist to look into APS, known on the internet as Hughes Syndrome, I am and other family members have hughes and also lupus together, it is crucial that you have the correct medical care, and are some experts dotted throughout the UK, if you tell me which area you live in, I can probably help you find the nearest one if you message me. Mary F x

[jackjack2 in reply to MaryF]

Thanks very much for your reply to my blog, I have taken on board all your advice, it has been very helpful. Thank you x

[Slowmo]

Oh dear, you have had such a difficult time, especially when your GP was not helpful, hopefully you are on the road to recovery and will get the specialist help you need.

I;m sure we've all felt scared at times, especially at the time we were first diagnosed. You are not alone in being worried, and we all understand what a daunting prospect a new diagnosis is. Use this forum to share your worries and concerns, people here have a wealth of experience and knowledge and what seems rare in an individual we often find out is a shared symptom be many others on this site.

All the best, and keep smiling,

Slowmo x

[overnighthearingloss]

Another APS and Lupus person here. Also a few others.

Agree with the above. Just thought I would mention that ibrupofen is contra-indicated for some peeps.

You really need a specialist to determine whether you could have APS as if you have it and go undiagnosed it could cause further clots.

[MaryF]

telegraph.co.uk/health/4400...

Mary F x

[Nightjar in reply to MaryF]

Thanks Mary - great link. xxx

[jackjack2]

Thank you everyone who commented on my blog, you have been very helpful, I have so many questions for the Rheumotologist I have started a list as my memory is rubbish. Thanks again all you have been brilliant x

[Nightjar]

Some doctors!!! If your GP had listened to you and sent you off for proper testing at the time, the stroke may (NB I'm saying m a y) have been prevented! If this was my GP, I would report them. Check out PALS (pals.nhs.uk/) or ICAS (seap.org.uk/services/nhs-co... for information.

Also - you have the right to change to another GP. Good luck. xxx

[jackjack2]

Thanks for your reply to my blog. I'm afraid that I don't have the strength/energy to complain. I have been struggling for 2 years with depression/anxiety, being told I have arthritis and eczema and being made to think that I was faking it because of my anxiety. If I hadn't had a stroke I would be none the wiser, I just don't have the strength anymore xx