How long did it take to be diagnosed with lupus ?
Did anyone had a spinal tap to confirm lupus
Hi,
! I'm not familiar with a spinal tap being a typical diagnostic tool for diagnosing Lupus. It may be done to rule out Lupus, but since it's a slightly uncomfortable and mildly invasive procedure (in my opinion), I doubt it would be a test that is used frequently in regards to Lupus.
As far as how long it takes to get a firm diagnosis, well, that varies widely. Some of our members have been diagnosed relatively quickly (within a week or two), while others have had to wait months for a clear diagnosis. It really depends on a lot of factors.
Are you still seeking a diagnosis?
Best, Erin, Team Member.Thank you for responding back to me. I was diagnosed in 2001 with lupus and was told that a spinal tap was required in order to make a proper diagnosis. I ended up having a stroke and was paralyzed for three months. I suffer mostly from vesculitis and take a large quantity of steroids. Thank you so much for caring
Coral, yikes! And, that may be one of the reasons the spinal tap is considered a less popular diagnostic tool. It does appear to still be used in some cases, but I just don't come across too many member stories where they had to have a spinal tap. There are some inherent risks with the spinal tap and you, unfortunately, experienced some of the more severe risks!
I will be interested to see if more of our members comment on your post, as I would love to get some actual information on how many people are still having the spinal tap procedure for Lupus diagnosis.
And, I am so sorry you had such a terrible experience from your procedure!
Best, Erin, Team Member.
It took about 2 years to get a firm diagnosis. No I did not have a spinal tap. I am sorry you had to go through that.I understand that it is not an easy procedure to go through. I hope that you have found some treatments that help bring some relief. ~Racquel~ Team Member
two years wow! thank youyeah it can take up to 6 years to get a firm diagnosis 😩 ~Racquel~ Team Member
Hi Coral I haven’t done any research super recently but last I saw it was lik 6-8yeara between the original symptoms and diagnosis. For me it was about ten years before my diagnosis. But I know I am not alone in it taking so long. It sucks and it doesn’t make it right. But it’s common. As for the comment regarding having an LP/spinal tap when ruling out lupus. (I can’t find the original comment for some reason) This has never been a standard of practice. But if they are also looking to rule out other conditions like meningitis, or MS they may do one. I would personally rather have them do all These tests and catch something rather then have them go back and potentially find later. But that’s just me.
Amber RN, BSN, Team Member
