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Old 05-28-2009, 02:53 AM   #4
Angel MJ
Senior Member
Join Date: Apr 2009
Location: Johannesburg
Posts: 221
Angel MJ HB User
Re: One year I'm positive, now I'm not???

hi biloxiblue ... AAAARG! + HUGs sorry things are tough at the moment.
gets v.frustrating sometimes but as long as we are living then the learning continues.

neg bloodwork comes up time & time again ... please remember bloodwork is not the sole criteria for dx lupus. Blood results do vary + in lupus is usually indicative of *current activity* + *organ involvement* (my personal understanding) Perhaps neg result NOW means no *major* disease activty or possibly results lean stronger to other AI disease.
i do not think it should it mean your previous dx was wrong - especially if you meet the other criteria but maybe because you are not having any physical relief to lupus specific treatment they are re-thinking? (again, only my opinion)

you mentioned your skin looked odd ... if i remember correctly ... there is a specific anti malarial brand that has a side effect of greyblue looking skin (sorry not sure which) Dr Daniel Wallace's book has a chapter on drugs their effects & side-effects ... (have lent my book out or i would look it up) ... try get hold of a copy! explains things the way we/laymen can actually understand! i learned more from my 'little hardcover' + 2 months on these boards than my rheumie explained in over 6 years!

i have 'eye issues' too ... was dx with 'dry eyes / vortexes' secondary to chloroquine. became a huge problem not being able to see properly ... try taking minutes when you can't see what you are writing ... oh boy! now have 'minor' issues, dry eyes, red eyes, light sensitive etc (suspect an underlying sjorgens thing here) but i can mostly read now ... point is - you are not alone! and it does suck! but that is why it is important we address any symptoms early so that any 'damage' can be stopped/reversed etc ...

Hang in there and hope get your answers ... if the doctos is not giving you answers think about getting a 2nd opinion?

PS please watch your stomach + kidneys with those pain pills! if they are not giving any relief ask your doctor if u need to take them? our bodies have to suffer an onslaught of treatments which sometimes make us sick until we realize that they don't work for us as an individual ... there is mostly something that will work for us ... trial & tribulation, living & learning. that rollercoaster ride we are on (saw a post once re:lupus being more like the whole amusement park and visiting most rides at some point not just the rollercoaster)

hope you get relief soon!
sorry i said so much!

Last edited by Angel MJ; 05-28-2009 at 03:01 AM.