View Full Version : Undiagnosed and looking for answers

Rach S
09-17-2013, 10:44 PM
Hello Everyone,

I'm currently playing the waiting game on getting into a rheumatologist and getting a diagnosis of lupus. Based on family history (my mom and her half-sister both have lupus) and symptoms I'm almost positive that I have it. Right now I guess I'm just looking for answers to all these symptoms wondering if anyone else is going through some of the same things. I'm only 23 years old so some of my symptoms are pretty scary and embarrassing for someone my age. My first symptom (thoracic back pain) started 4 years ago and after x rays and an mri they still can't find a cause for it. In the last 6 - 9 months that has gotten worse and new symptoms have appeared causing the nurse practitioner I'm seeing to consider Lupus. The problem is that I don't have some of the most common symptoms of lupus and some of my symptoms I have not been able to find on any of the lists of lupus symptoms (These seem to be related to the autonomic nervous system). So if anyone has had any of these symptoms and doesn't mind sharing I'd really appreciate it. It would help a lot knowing there's other people going through the same thing.

In the last 6 - 9 months:

1. Thoracic back pain is now Banding pain all the way around my chest
2. Joint pain most often hands, jaw, knees, shoulders, and ankles but sometimes other joints as well
3. Joints also pop often (don't know if that means anything or not)
4. Possible Neurogenic Bladder (nurse practitioner didn't feel qualified to make diagnosis)
5. Raynaud's (diagnosed in 2001) hadn't affected me for a few years until recently it's been flaring up again
6. Fatigue (things like just mopping wears me out)
7. Intermittent Nausea after being out in the heat (even just for 10 min.)
8. Rapid pulse for no reason (has happened only a few times doing something as simple as putting laundry in washer)
9. Feeling flushed in the face but rest of my body is cold
10. Teeth started chipping (doubt its related but thought I'd put it on here)
11. Minor Problems with word retrieval (Its like my brain knows what I want to say but it gets lost on the way to my mouth)

I think that covers everything. Thank you in advance to anyone out there who can help. I don't know when I'll be able to see a rheumatologist, I haven't even been given a referral yet. So I'm just hoping to get some answers while I wait.

09-18-2013, 02:40 AM
Hello and Welcome to our family;
I truly hope that you do not have Lupus. However, each symptom that you've listed has been seen as a symptom of Lupus. You mentioned that you could not find these symptoms in your research. If you read through many of the posts here, you will find that we have members who have suffered from every symptom that you've listed.
While I am not saying that you do have Lupus, I am saying that your symptoms are familiar to those of us who suffer from the disease.
Please keep us informed of your diagnosis and what treatments your doctors prescribe. I wish you the very best.

Peace and Blessings

Rach S
09-18-2013, 05:48 PM
Thank you so much for the reply.
I did read several of the threads on here before I posted. Its kinda silly but I was actually pretty nervous about posting the first time. I have never been involved in a forum before. It feels good though knowing there are people out there that understand. As I stated my mom had lupus, but due to not being treated, the lupus turned out to be fatal and I was too young to ask any questions about it. Also, I'm not able to get in touch with my aunt who has it. So finding this forum and all of you out there who understand has been a relief. Thank you. In a way, it would also be a relief to get a lupus diagnosis. At least then I would have an answer to all of these problems and its a little less scary than some alternatives. One friend of mine has MS and said that the banding pain and neurogenic bladder were MS symptoms and that got me really scared, but lupus is the great imitator and with my family history I'm actually hoping it's lupus. I guess right now its just the not knowing that is so scary. Right now I am waiting for my next appt with my Nurse Practitioner so I can get a referral. I don't have insurance so the last two months have been wasted with the NP trying to get me into an assistance program to see a rheumatologist. My income was too high though so I'm back to square one. I did find a rheumatologist in my area who takes self pay but even when I get the referral it's a 4 month wait. Well here I go rambling again. Thank you again for the support.

09-22-2013, 10:10 PM
Hi Im also a new member and i really hope its not Lupus but i understand that you need answers !! sorry to hear about your mother passing away from this horrible disease!!!I lost my sister also from lupus too, she just turned 40 years....im 53 years old and ive had lupus since i was 20 yr old so ive had it a long time and things seem to only be getting worse,so that why i hope you dont have it....i dont know where your from but in massachusetts we have mass-health if you dont have insurance , you should check with your state to see if you qualify for something like that...i just hope you can get in to see a doctor real soon for a piece of mind..maybe the np can push to get you moved up on the doctors list so you dont have to wait 4 months ...please keep us posted and best of luck to you....gail