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Posted By : Nickiesandra - 2/4/2017 4:08 PM
Hello all, I am brand new to the page and I hope you all don't mind me asking some questions. I am currently waiting for some test results and I feel like I am losing my mind.

So just to give you a little background info, I am a 36 yo female, I come from a family that is riddled with autoimmune disease and one of my aunts has had lupus for years. My problems started quite a while ago with terrible joint pain and some rashes, hair loss etc. I have a couple of ANA tests done over the last ten years or so that came back positive but low positive. The most recent time my GP sent me to a rheumatologist who never even looked at my lab results and told me he thinks I just have reynauds. So I just kind of gave up.

Recently, however, my symptoms have changed and gotten much much worse. My joint pain is unreal. It's bilteral but for some reason my right knee and hip seem to be the worst. I now have bald spots too. I have been having horrible heart palpitations and shortness of breath for a good few months now. I had an EKG and it looked fine. My newest symptom is a hot rash that shows up at random then fades. I am not sure if it is hives or what. But it has happened a couple of times in the past week. Sometimes my feet kill, usually on the bottom and I have to put ice packs on them to get them to stop. I also get ulcers in my mouth and my tongue always looks weird. I know I am forgetting some of my other symptoms but I thought I would ask you all what you thought. Am I losing my mind or is something really up?

Thank you so much in advance.


Posted By : Nickiesandra - 2/4/2017 4:13 PM
Oh and I forgot to mention the unreal fatigue, brain fog and dizziness. I am literally never not tired.

Posted By : Dustmite - 2/5/2017 3:55 PM
I have a lot of the same symptoms you do except for the thinning hair. I have my first rheumatologist appt tomorrow, after a 2 month wait. You are mot going crazy. Find yourself a good family doctor that you trust and have them recommend a rheumatologist who specializes in lupus. Try not to spend spend a lot of time on the internet diagnosing your symptoms, you will drive yourself crazy. Keep seeking help until you get it. A doctor who turns you away is not a good doctor. Have a good support system. If you don't have a support system and you are a believer seek out your church. If I have learned anything since December it's that you have to keep seeking help until you get it. Lupus is not an easy disease to have diagnosed and you are the one in control of your health, getting a diagnoses and seeing it all through. Don't give up.

Posted By : Nickiesandra - 2/5/2017 4:05 PM
Thank you so much for your reply. I wish you the best of luck in your journey as well. Let me know how it goes. 🙏🏻🙏🏻 Prayers to you.

Posted By : Lynnwood - 2/5/2017 4:32 PM

It sounds as though you certainly have something going on. I would advise you to see a different rheumy for a second opinion. Actually, I wouldn't even mention the dismissive rheumy to the 2ond one!

One way to find a rheumy that is up-to-date on auto-immune issues is to visit and find your local chapter. Then contact the local chapter and get the names of the Drs active on there advisory board. These are the Drs interested in treating your kinds of symptoms.

Hang in there, and let us know how it goes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Nickiesandra - 2/6/2017 6:46 AM
Thank you so much Lynnwood. I should have my blood work back today or tomorrow then I will make an appointment with a rheumy. Thank you for the information, I will look right now to see who is local.

Posted By : Dustmite - 2/16/2017 12:46 PM
Hey its Dustmite again. I had my appt with the rheumatologist yesterday. Blood tests and ultrasound results long awaited are in. I have lupus. The sle kind and degenerative arthritis in my feet, knees, wrists, hands and spine. And spinal stenosis. (The spine stuff was diagnosed about 15 years ago). After two years of being sick God gave me a family practice doctor who went above and beyond. She poured through my med records and did blood tests. She is very young and was eight months pregnant, she said she loved puzzles. I was her first suspected case of lupus. She referred me to a rheumatologist who repeated and added many blood tests. (13 vials of blood). He also looked through my medical history, the journal I kept of my symptoms and fevers. He asked me a lot of questions and checked for tender spots and different problems. Finally on my second appt all of this came together for a diagnosis of sle. He gave me a steroid shot and a prescription for an anti malaria drug. Apparently this drug takes awhile to work. I can be patient now. I'm not going crazy. There's a reason and a name for all my infections and pain and swelling all over. I know this will work out for you too. You just need a rheumatologist who may have to dig a little bit. Easy to say, but hard when your the one waiting for a diagnosis. Thank you for your prayers. I do believe that God hears us and does answer. Drop a line on this thread and let us know your progress. God Bless You and Yours. D.

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