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Current Topic: What if it's NOT Lupus? Referred to Rheumatologist....

Hello everyone. I am new to this site. I have had so many symptoms for so many years that I apologize in advance for the length of this post. I believe my symptoms started when I was pregnant with my first child in 2001. I had several UTIs and respiratory infections and developed pre-eclampsia with her @ 37 weeks but regained my health briefly after delivery. Of course I was exhausted (but who isn't with a newborn?). I then developed pleurisy which was very painful. The exhaustion continued and I began having problems with carpal tunnel. With my second child, I seemed to be developing a pattern towards pre-eclampsia but she came before my BP got bad enough. I was very sick throughout this pregnancy as well with UTIs and sinus infections, ear infections and finally a ruptured eardrum. I hemmorraged(sp?) severely after delivery and that could find no reason that my blood was not clotting. Of course I went home very anemic and exhausted. The exhaustion continued along with muscle and joint pain. Then I was in a minor fender bender and they did xrays for hip pain. The xrays showed arthritis in my hip. At 28?? In 2006 I woke up one morning and could barely get out of bed. I was very sick for almost 3 months and went to the doctor several times with no dx except sinus infection, resp. infection, flu, asthma, allergies. I was so tired I could barely function to even take a shower. This finally passed but I've never been the same since. I've gradually accumulated many more symptoms, some that come and go & some that don't. My primary did tell me that she suspected lupus but my ANA was negative so she called it "borderline lupus". Then with my third pregnancy - pre-eclampsia at 26 weeks and on bedrest for the whole pregnancy. This took a toll on my body. Being a mother of three was blamed for most of my symptoms. I will list them as briefly as possible. Extreme fatigue, headaches, painful joints (hands, hips, knees, shoulders), carpal tunnel, swelling under eyes (may be from allergies), petichiae, Raynauds, mouth & nose sores, ringing in ears, painful bumps in the outside of my ring fingers, TMJ, memory problems (forgetfulness & difficulty concentrating), depression, anxiety, heart palpitations, bruising, Irritable Bowel Syndrome, muscle weakness, numbness in toes, occassional shortness of breath and chest discomfort, and a weird rash that I get on the outside of my armpit area that itches. I wake up in the mornings like I've never slept and even nod off while driving farther than 30 minutes. I woke up recently with a sore throat only on one side, a sore in my nose & mouth and my ear, teeth and skin hurt, all only on my right side. And I had the weird rash on my left arm. The doc ordered bloodwork and this time the ANA was positive, 1:80 speckled (whatever that means). The only other 'flag' was a slightly elevated creatinine. She referred me to a rheumatologist to be evaluated for lupus. BUT I'm scared ! Because if it's not lupus, then I will continue to think I am nuts!! What do I need to know, ask, etc. when I go to the visit so that I get the most out of it? Are there any tests that I need to make sure they do? By no means do I WANT it to be LUPUS, but if it's not, then WHAT is it? Is it terrible to feel like I would be RELIEVED with a diagnosis? Because then there is hope for at least treatment!! I'm sorry this is so long but I am feeling desperate right now. Thank you in advance...

Dear E--there are many tests that the Rheumatologist will conduct. I know them well. However, a high ana level does not mean that you have lupus. My ana was 1:6 and had the tenative diagnosis of Lupus. I did not have lupus. My ana levels elevated because after 2 years in agony, a bone leison in my jawbone was detected. I had a monster of a surgery in June and I am now waiting for the bone to graft. Any kind of severe inflamation could cause your ana levels to soar. There is a new cat scan machine that is now on the market. It is called the I-cat cone beam. It takes 500 pictures in in 3D in 30 seconds. You might need to have this done due to the fact that your mentioned TMJ, headaches, etc. Also, you could have hepetic neuralgia. That is easily treated. You are right, you don't want LUPUS. Get a second opinion and ask about the i-cat cone beam ct scan. I will pray for you. arlana Do not be frightened. You are not alone. I wish I could talk to you, but this website doesn't allow that. God bless you and your journey through this period of your life. I have hope now that my season of waiting is about to be over however, you need the correct diagnosis.

I am sorry to read about all that has happened to you. If you don't have lupus, be thankful. I was diagnosed in 2005 and have tried many meds and for some reason or other, had to come off of them. I have had a flare since irst of May. I am still broke out with the rash but it is clearing up.I started on a natural med for my rash, It s norpalea. It is advertised on TV. It is cactus juice. It has a sweet taste, I'm believing it will help with the lupus

Whether or not your illness is classified as lupus doesn't really matter. The world of autoimmune disorders is exploding. For 10 years I was diagnoses as "unspecified autoimmune disorder" or "unspecified mixed connective tissue disorder" before finally being diagnosed with lupus. The treatment is essentially the same. Everything's the same. You have to take your life into your own hands and really really manage things -- minimize stress for real, get enough rest for real, eat right, maintain a regimented schedule, have the strength to say no to social outings when you're not up to it and get a support system of people who if not helping at least don't hassle you. I was on plaquenil and prednisone for a long time which helped. Now I'm on more aggressive drugs because my symptoms spread to my central nervous system. But I still work full-time, run a non-profit organization, have a very busy and full life. You'll be ok.

Hi Elizabeth,

I am going through some of what you are. I have been going back and forworth to doctors since 2004 trying to figure out what in the world is wrong with me. My Lupus would always come back negative. So they diagnosed me with Fibromyagia. Everything they tried didn't work. They just made me feel worse. Just recently, I went back to my primary doctor and he tested me once again for Lupus because I have the butterfly rash across my face and alot of my symptoms go along with Lupus. It came back positive so he referred me to another Rhuematologist. The Rhuematologist has started me on prednizone for now to get me feeling alittle better fast. So far so good. Have you been to your doctor yet? I sure hope that they have been able to help you and get you some answers.

Elizabeth,

I feel crazy, but gave up on looking for an answer. Docs never seemed alarmed. Told me I could visit a Rhuem on my own, but the soonest appt I could get was 6months out, so I gave up.

Two years ago I was diagnosed with End Stage Renal disease in my right kidney and had it removed.
Months later, I lost over 1/2 of my hair, had sores in my nose, petechiae, thrombocytopenia, right knee pain, exhaustion, rashes... list keeps going! My ANA was positive and my platelets were 110,000 and when I went back for follow up two weeks later they had dropped to under 90,000. My PCP said she wasn't worried because they weren't below 50K. I did go back a few months ago and platelets were good.

I don't know what is wrong with me, but fingers point here. Doctors hate when you self diagnose.... I did that with my kidney, as they weren't doing their jobs. I can see a pattern with whatever is wrong with me. I have the exhaustion, then petechiae, then my scalp goes nasty crazy. Some months I have the joint pain, some months my lymph nodes in the back of my neck swell up, and some times I don't want to get out of bed. I have noticed that if I one or two beers, my petechiae and scalp are worse... no idea what relation this could be.

I just wanted to let you know that I hear ya sista! I hope that you figure out what is wrong and find a way to deal!

Alaina