Lupus - kaleidoscope Disease

[babssara]

I've re-named the condition. Why?

I was diagnosed in July GCA (giant cell arteritis) and PR (palindromic rheumatism) and commenced on 60mg pred.

I was referred for a battery of tests, including MRIs, CTs, Nerve conduction studies, DEXA, x-rays and BTs, which have been carried out over the past 6 months,

I have been referred to endocrinology (hypothyroidism), ophthalmology (GCA), Neurology (spine), Respiratory (recurrent chest infections)

During this period I have encountered numerous "symptoms:

Severe headache

painful/swollen/inflamed joints

diminished vision

neck pain

lower back pain

recurrent chest infections

cracked ribs due to coughing (osteopenia)

fractured right arm (blackout)

various wrist and ankle fractures

breathing problems

swallowing problems

jaw pain

mouth ulcers

nose bleeds

Irritable bowel syndrome

balance

dizziness

confusion

memory loss

hysteria and even,

steroid induced psychosis

When I was going mad (through being on too high a dose of pred for too long) my rheumatologist looked at the MRI of my brain to convince me that nothing was wrong. The report confirmed "no significant abnormality". Brain still intact.

My eyesight continued to deteriorate and about a month ago, I had a really sever headache with loss of vision for 10 minutes or so. It terrified me. I rang my GP and was told to get to A&E immediately and tell them I was GCA, which I did. 4 hours later still waiting to be seen. So I came home untreated.

Had further appt with Ophthalmology the following week. Repeat eye test. As expected, vision really deteriorated. Blind in left eye. Consultant couldn't understand how my sight had become so bad in such a short space of time.

When he checked brain scan report. He said I had had multiple strokes, the last one being when I lost my vision!!!!! I was absolutely shocked, angered, scared. I was previously told scan was normal!!!

When I lost my sight with severe headache I was actually having a stroke in A&E and they didn't even notice.

Anyway, as well as that my lung problem was getting worse. I really could not breath. Was put on nebulised steroids, really strong abs and told I had bronchiectasis! Again what a shock.

The thing is, my chest problem seems to have resolved. I can take deep breaths without pain. I've not been able to do that for years.

Now my lungs are ok, my spine is crumbling and I have to have cervical and lumbar disc fusions.

And around my body this dratted disease goes.

Thants why my illness is called Kaliedoscope.

One picture overtakes another and keep s repeating.

Babs x

[cuttysark]

Hi Babs,

You have indeed a Kaleidoscope or maybe even a Maelstrom of an illness. A violent disordered whirlpool of nasties!

I admire your fighting spirit , as despite it all you are always on here supporting and encouraging the rest of us.

Hopefully you will get some relief soon, and as another new year beckons maybe new treatments will be in the pipeline for us. We will pray for that!!

Meantime thanks for your input here and keep fighting, but remember to be gentle on yourself.

C xx

[babssara in reply to cuttysark]

Thanks C. It's what keeps me going. I feel like rallying the troups. Takes my mind off this damned illness.

I just want to stay angry so that I can fight it. But I keep my sense of humour too.

X

[EOLHPC]

Good one❗️

What an ordeal: babs, you're an inspiration! Thanks so much for telling us your story...it's details like those you've shared that can really help us all see more clearly how important it is to learn the full spectrum of symptoms & issues that distinguish our individual versions of immune dysfunction. Just as every kaleidoscope image is unique, so every case of immune dysfunction is unique...we should beware of doctors who don't realise this and try to make us all fit in with universal criteria!

LOVE your kaleidoscope idea👏👏👏👏👏

Glad you're here on forum...am looking forward to updates as your diagnosis & treatment move forward

XO 🍀🌻 coco

[AnnNY]

Make sure you are tested for APS, since that can cause strokes and be treated so you don't have anymore strokes. Are you taking anticoagulants?

[babssara in reply to AnnNY]

Hi, I have a perforated ulcer so can't take Aspirin. Just been put on clopidogrel yesterday. Still concerned though, as I've not yet heard from the Stoke Team, or my rheumatologist.

I am going to my GP tomorrow and will ask for this test. Thanks so much for the information.

Do you know, with all our knowledge, we will make ourselves better won't we?

X

[Purpletop]

Oh my god, you poor woman!! How can they not see the strokes, both before and after? And leave you without any contact, treatment, next steps etc afterwards?

I agree with AnnNY about checking for APS but lupus can increase the risk of strokes too.

I'm so sorry all that happened to you - it's a constant fight to maintain our bodies intact but we are alone in this fight. The doctors that are supposed to help us, let us down. To lose vision in one eye is dreadful, of course you're angry.

Thank goodness you didn't have worse effects from the strokes.

Let us know how you get on.

[babssara in reply to Purpletop]

Honestly I'm fine, don't worry about me. They've found it now so I will get top class service from now on because they know they've messed up.

I just wanted to raise awareness of symptoms that require immediate treatment.

By the way what is APS test. I heard of INR for blood clotting but not this one.

Thanks

Babs x

[Purpletop in reply to babssara]

Yes, that's the one -APS is the disease name that causes blood clotting (Anti-Phospholipid Syndrome). Good luck with it all and thank you for sharing, we need all the information we can get.

[AnnNY]

hughes-syndrome.org/about-h...

This gives you the list of tests. Also there is a good Hughes Forum here. It's even less well understood than lupus, but Dr. Hughes is English, so it seems they know more in the UK than the US, for instance.

[babssara in reply to AnnNY]

Thanks for the link. I have been on the Hughes Syndrome forum. I think it pretty conclusive, I've got sticky blood. When I get an appt for the stroke team I will ask them to test me for this. I am on Hydroxychloriquine and clopidogrel, so I hope I am covered for now.

[misty14]

Hi Babs

What an awful story you've told about your health!. I do hope things improve now your finally getting the right treatment!. Keep us updated as to how you get on and take care. X