Need a Little Help from some friends please.

[willowwag]

Hi all not been on here for a bit as been having a ruff time with my Lupus, The other day having gone outside in the sun for 20 mins, and turning bright red from been photosensitive it was cloudy so I thought it might be ok, came inside started shaking and it then turned into a hell of a nightmare, banging head then full on Lupus Flare they think I had a full on seizure and was unconscious for 10 mins I was rushed straight into hospital. I have Lupus SLE, but they are investigating me for TRAPS and doing a screening for it, also running Lupus bloods again and EEG and MRI brain scan.

I had left-sided hemianaesthesia and my CRP was 23 and ALT 240 I need help interperating the CRP on the scale and ALT as I can not remember what they should be. and has anyone ever been given a TRAPS screen its a TNFRSF!A test. Would ask them to run it by me again for the 100th time but I can't get my brain to retain it lol x x Thanks all

[Barnclown]

Oh willowwag: 🙋🏼 am so glad you posted 😊....what a lot you're going through 😔...I had to google TRAPS...in case anyone else needs it, here is a good UK link:

ucl.ac.uk/amyloidosis/pdfs/...

...my gosh your medics are stepping up, and, of course, so they should 👍👍👍👍

Thank you for checking in...I've been missing you. Please keep us posted. I think you're a 🌟! Sending you every best wish 🤞🤞🤞🤞

🌷🌷🌷🌷🍀🍀🍀🍀 coco

[misty14 in reply to Barnclown]

Thanks for helpful link Barnclown on Traps!. Hope your coping X

[Barnclown in reply to misty14]

🙋🏼 You're welcome...more or less coping 😉😘🍀

[PMRpro]

As you have found out: UV gets through the clouds which is why the worst sunburns are often acquired on cloudy days.

In the UK the normal range for CRP is usually less than 1. Typically the range for normal ALT is between 7 and 56 units per litre. Mild elevations are generally considered to be 2-3 times higher than the normal range. BUT - every lab differs slightly and the units may vary so these aren't gospel for the ALT (of course 99% of the results in a search are American!). The report will have had the result with the normal range for the lab in brackets after it).

Can't help with the rest though - get well soon.

[johare]

Hi willowwag, I will tell you the little I know, which is was tested for this due to seizures following high temps and rashes all over. All I know is TRAPS is a genetic condition which can be from one parent, causing a long list of symptoms which can stay with you and then disappear for a time. TNFRSF!A is the protein marker they are looking for as and indicator. I hope you get your answers soon.

[willowwag]

Thank you all for the lovely replies its so good to have you all here, where I can just come on and ask. Sometimes it goes in one year and out the other and you don't like to ask the Docs to explain again and again. Missed you all to and its feels good to be back. waiting for my appointment to arrive to say all the results are in. you never know I might win a holiday to the Caribbean haha ha or get the finals on Britains got Lupus xx love to you all keep you posted. x

[misty14]

Hi willow wag

Lovely seeing you back but sorry your having a tough , worrying time. Good luck with your results, all I know about CRP is if high then due to infection or in your case maybe the Traps?.. In lupus it stays stubbornly low despite inflammation due to a quirk in our livers. Do hope your sorted soon, keep us posted. X