New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

SRCADSQ
New Member


Date Joined Feb 2016
Total Posts : 2
   Posted 2/24/2016 5:10 PM (GMT -6)   
In Dec I started getting crippling lower back and hip pain. Did the regular round of doctors and physical therapy because of the basic "back problem" rhetoric. PT treats me for extreme back pain, tailbone pain, rotated hip. No relief. Pain to the point where I couldn't stand for more than 5 minutes, couldn't walk etc.

about a month ago, it dawned on me that my mother has severe RA and my sister died from sarcodosis, so maybe I am getting an autoimmune disease. I go to my homeopath and she runs blood work. My ANA is positive. 1:160. She says that it looks like lupus.

She sends me to a rheumy. Rheumy says go to a orthopedic -maybe you have a back problem. Meanwhile runs some additional blood tests. Saw ortho today, he doesn't think that I have a back situation but am waiting to go for an MRI anyway. Meanwhile 2nd set of blood work came back and rheumy tells me that it is "normal" - meaning that I dont currently have any organ failure and confirms the high ANA.

Tells me to come back in 4 months to be retested to see if anything changes. I have "some" symptoms of RA and Lupus but currently have about 3 (depending on the list I find, I've seen a few of them), yet you need 4 out of 11 that are normally used to "confirm" diagnosis along with the ANA, so no diagnosis. For the past year or so I have been getting inflammation in other joints - hands, knee but have been blowing them off as age related.

My gut tells me that I have early stage SOMETHING. What - I don't know yet and I don't want to sit back and wait for organ failure to know. I want to get in front and be proactive but need to know what I am actually dealing with. I started acupuncture about 3 weeks ago and it's only because of that that I can actually walk right now.

Does this sound like early stage Lupus or some other autoimmune disease? Does anyone have any insight at all? It has now been nearly two months and I am not back to normal, but feel like the pain is fading away and I am slowly getting mobility back. Sounds like a "flare" from what I have read. But the rheumy doesn't seem to think so because I don't have mouth ulcers, insensitivity to light, etc., etc.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 2/24/2016 8:01 PM (GMT -6)   
Your rheumy seems to be the conservative type. Other rhuemies might have put you on plaquenil by now, or maybe even prednisone.

You might consider a second opinion -- also check out the "official" diagnosing symptoms from the link Diagnosing Lupus below.

ANA is considered 1 of the 4, the inflammation in hands would also be considered 1 of the 4, ....
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 2/24/2016 8:07:52 PM (GMT-7)


SRCADSQ
New Member


Date Joined Feb 2016
Total Posts : 2
   Posted 2/25/2016 7:48 AM (GMT -6)   
Thank you for responding and for the information. I also have other symptoms that I have seen attributed to Lupus, but that are not on this list such as brain fog and fatigue. Do these "count"?

Thanks again and I am in search of a rheumy for a second opinion. Would you happen to know of a national organization that I might be able to use as a go-to for a referral? I have the word out on my end but so far I am told that I might as well be looking for a unicorn in my area.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 2/25/2016 8:56 AM (GMT -6)   
The list they use for diagnosis is slightly different than the list of symptoms. Don't ask me why, I have no idea!

Here is the 'other' Common Symptoms.

I generally recommend, on that same website, www.lupus.org, going to the section where they list the local chapters. Then contact YOUR local chapter and ask who is on their advisory board. They can't recommend a specific Dr, but these will be the Drs in the area who are MOST interested in auto-immune diseases -- and the most interested are usually the most well-informed!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, June 24, 2018 10:38 PM (GMT -6)
There are a total of 2,974,887 posts in 326,219 threads.
View Active Threads


Who's Online
This forum has 161310 registered members. Please welcome our newest member, ejt998.
318 Guest(s), 1 Registered Member(s) are currently online.  Details
CAdogsRus