Lost & confused

Hi, I'm not sure where to start really but here goes. 30 years ago at the age of 16 was diagnosed with polymyositis after having severe weakness, pain and fatigue. I went into remission at 22yrs old. I had several miscarriages and a termination at 24 weeks due to the baby not growing properly & he would not have survived because of blood flow issues, it was found I had APS.

I had a good few years ( about 15yrs) without any symptoms apart from fatigue, rashes on my knuckles, aches and pains but nothing major. I had some bloods done and my ANA came back Jo 1 & Ro positive, it was suspected I had mixed connective tissue disease. Last year I had a CT scan on my lungs witch showed lung scarring & a few weeks ago after I've been suffering terrible brain fog, forgetfulness, tiredness & all I can describe it as is shaky eyes, I had a brain MRI. On Sunday the rheumatologist rang to say my brain had scattered white patches where small blood vessels had died due to not enough oxygen & I needed blood tests done & start aspirin. He said it goes along with my lupus?? I didn't know I had lupus? He asked me to go for bloods yesterday and the nurse said they were to rule in/out lupus.

I'm now worried & confused, does anyone else have any experience like this? Do these sound like typical symptoms? I know I should wait for results but I'm just so worried, I'm mentally exhausted with it all.

Thank you for reading Nessa

7 Replies

  • You mention you have APS, here is a link to the Hughes Syndrome website. (APS/Hughes syndrome/Sticky Blood)


    There is also a Hughes Syndrome Forum here on Health


    Sorry I can't answer your questions. I hope you get help and feel better soon.

  • Thank you, I've been on and had a look, it did help to read up & hear others with similar problems, thanks

  • It certianly sounds as though you've got something going on there - as you are also anti Ro positive, there is the possibility that it may also be Sjogrens Syndrome bssa.uk.net/pdfs/informatio... I was told for years that I had lupus but was only fairly recently told that I actually have Sjogrens alongside APS (I also had miscarriages and pre-eclampsia problems in my 30s and I also tested ANA, anti-dsDNA and anti Ro positive). The two conditions are very closely related anyway and often occur alongside APS/Hughes. I found that I didn't really have active symptoms apart from the problems with miscarriage but symptoms have increased for me since I turned 40.

  • I have been tested (dry eyes test, sorry can't remember name of test) that came back ok although bloods (Ro) were positive. My symptoms are all over the place, mostly fatigue right now & brain fog, I started new job (within my old employment) today, I feel completely shattered & was sure I've made mistakes as just can't retain new information. Eeesh I feel like throwing the towel in & going to bed for a few weeks!

    Thanks for your reply

  • Do you get very breathless? if you do then ask for oxygen, you will have to be tested to see how much you will need per litre.

    My lungs are damaged due to the Lupus (Pulmonary Fibrosis). I was always breathless and severely distressed due to the breathlessness. I also know it was not good for my heart so I asked if I could have oxygen.

    I had to be seen by a Pulmonary consultant for him to give the go ahead for the test and oxygen.

    Now I see this consultant with my Rheumatologist in the same clinic.

  • Hi thanks for the reply, I get short of breath but don't need oxygen, I'm not getting any worse in that respect & it looks like my lung scarring is old & not progressing thankfully. My lung disease is called ILD, I was under the impression it was from my polymyositis, I'm now not sure, as I say I'm confused.

    Thank you

  • You have been PXd aspirin,were you PXd a statin also ? The small white patches in your brain would suggest that you have had something called lacunar infarct, this is a small, silent often, stroke in the brain. I have had multiple lacunar infarcts, I did not know that I had them. I have small vessel disease which leaves me open to having them, I may be having one now. To DX this an MRI scan would be used so it may not be. I wish you the best.

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