My doctor got bloodwork back and suspects that I have lupus because of the results. I'm going to see a ruematologist to get more testing. Does anyone have lupus?

I'm scared trying to get it off my mind until I really know but its always in my mind....

Anyone who has any advice would help... thanks fam

Hannah

I don't have lupus though they thought with my other problems/symptoms I may have some auto immune condition. I was tested extensivly and it turned out not. My friend with RSD though they think may have Lupus or other auto immune. I do have a friend with PN who has Lupus.
I agree about trying to stay in the moment which I know is so hard. It seems from what I have been reading whether it is connected or a fluke that people with RSD have other conditions to.

Dear Hannah -

I can't believe your doctor laid this ambiguous test report on you with a "could be [insert dreaded disease], time to see a specialist." Especially where CRPS has known autoimmune components!

(A few years ago a pulmomologist spent all of 90 seconds with me looking at a CT scan, said, "could be cancer, don't know" and sent me down the hall to his friend the thoracic surgeon for a surgical lung biopsy. Fortunately, it turned out that the Mayo Clinic has been doing these biopsies via flouroscopy assited bronchoscopy for 40 years and it was nothing to worry about in the end.)

Hang in there. This should all work out.

Mike

ps Sent you a PM.

Mike: Well the thing is is I am having some weird symptoms: I feel sick alot, I have a "butterfly rash" on my face... i thought it might be roseaca because my mom and sister have it so hopefully its just that... I have more body aches and pains that doesnt feel like RSD... more fatigue than normal... its weird.

She wants to rule it out. She did all the tests to check everything in my body just to make sure nothing was skipped over my my other doctors. I dont really have a general doctor, so I found her and since seeing her she is just being so proactive and great. I am not feeling like I used to feel with RSD... So i know something is wrong but not sure what it is... The thing is... my mom has optic neuritis, which is a precurser to ms, which is in the lupus world. so its something that she wants to check on and rule out basically, its not a diagnosis but just something that we need to further check out.

It may be negative, it may be positive. I am trying to be and stay mentally in a neutral stance, because I cant get my hopes up on either diagnosis. But if it is positive maybe I am chasing something that I think is RSD that is not... But maybe its just my RSD that spread to the rest of my body.. :|.... We will see... I know the RSD is in all of my limbs but, this is affecting my back, neck, head, weird things... Its hard to explain.

I have an appt with a rhumetologist next Wednesday the 17th. Kind of nervous... but hopeful that I am in good hands.

Mike: that is the thing: she knows CRPS has the autoimmune components, with that being said...she wants to be able to rule anything else out, but being that the numbers were SO high thats why it concerned her. I am glad that she is wanting to check it out. I would rather that then it just be dismissed as CRPS and it actually be lupus... you never know with the crazy body of mine LOL

Daniella: That gives me hope. I have a feeling it may just be my CRPS but, i am just not going either way for myself right now. I am so greatful that your tests came back negative!!!

Hannah

Hannah,

About 7 years ago Ibwas sent to my first rheumotologist for suspicion of Lupus due to my butterfly rash and Raynauds syndrome. The doctor did all possible testing and it all came back negative for Lupus.

2 years ago, I again went to a rheumatologist, still seeking a DX, and was told I did have a lot of positive indicators for Lupus including the butterfly rash, joint pain, Raynauds, etc... A lot of symptoms people with RSD share. I left again without a DX.

A bit later I was at a dermatologist, had a biopsy of my rash done and it came back as Discoid Lupus. A year later I was diagnosed with RSD. I do have other symptoms of Lupus and it would make sense, it's an inflammatory condition.

However, if it makes you feel Hannah, Dr. Shwartzman said there is no way my rashes are Lupus. He said it was extremely common with RSD due to the inflammation of nerves under the skin.

So, I'm still not sure, I just know steroid cream clears it up as does oral steroids. And, each time I follow up once a year for Lupus tests, the main detector stays negative.

Hang in there and don't stress, it'll only flare up your RSD enjoy your summer!

Very interesting... thank you for letting me know that. Did you get fevers? feverish feeling? feeling like you are sick all the time... I had a change in how I felt about 5-6 months ago. Either my RSD got way way way worse or I am having syptoms of something else.

Its not RSD feelingish though.. Its a different feeling when i get flared up with it... its weird. I guess its better to be safe than sorry...

Thanks so much- gives me hope that its not something else... Interesting that Dr. Schwartzman said that it wasnt lupus... Thats good news. I do know that IF it is lupus, we can still get ketamine!!! WOOO HOOOO!!!

Hannah

Hi Hannah,
Yes, no worries about the ketamine, whethernitnisnornisn't Lupus, unless something was to come back in your blood work showing you were having organ problems because of the ketamine, I doubt they'll be taking you off, Lupus or not. If anything, it would likely help with Lupus symptoms to a degree.

Lupus testing can come up with a lot of false negatives and positives whichnis why it really needs to be a collection of a few tests plus a number of different symptoms to really get a true positive. I tested borderline positive on a few systemic tests but it's not enough to diagnosis systemic Lupus. I was on medication for it because I tested positive for the skin form and that does treat all forms of it.

I did feel somewhat different before I started those meds; more tired, achy and stiffer then usual. As for fevers, I never get them but I was getting a lot of hot flashes, cold sweats, chills, etc. Honestly, it's extremely hard to say because I started Ketamine treatments within a month of starting the meds for Lupus. I did stop the Lupus meds about 5 months ago and was in remission from RSD for a few months until I got sick and had a flare up. The rash on my face did flare up at the same time so I really don't know if its RSD or Lupus but, most importantly, if it's Lupus, it certainly doesn't seem to be progressing since I'm on Ketamine!

It's frustrating as can be not knowing but when even the doctors can't figure it out, as long as isn't harming me anymore, I'll let it go.

well mine ISNT getting better with ketamine when ive had it the past 2 times... and symtoms are getting worse the more time passes. so its harming me and I am WAY too young for this. I have to worry about it and get to the bottom of it. False positive or not something is lerking in my body that isnt supposed to be there that is being dismissed. Doctors dont know everything I have learned. If this doc says nothing, I will go to another until i feel better. The rsd fine, but this isnt my normal rsd feelings.

Hi Hannah,

Lindsay has had positive ANA tests all the time. She has never been diagnosed with Lupus. There is an autoimmune component as Mike says. You will test negative for lupus. Just like Lindsay all the time. How are you otherwise?

Sandy