View Full Version : New--Wondering if I have lupus

03-24-2009, 08:00 PM

I am not diagnosed at all at this point, so if I should not be here, just let me know. I won't be offended. I am at the early stages of the diagnostic process. I suspect I might have lupus or possibly scleroderma based solely on symptoms and family history. I had ANAs done last week but cannot seem to get an answer about the results. I will keep calling, of course. I have had lots of bloodwork done over the years as vague symptoms and "phantom pains" reached levels that impacted my ability to opertate on a daily basis for a period of time. My bloodwork and other testing results have always been eerily normal in my mind considering how I have felt. I am afraid that will be the case, and I'll get another, "It's just stress, " or "You have Exhaustion Sickness," diagnosis. I'm fairly certain there is not actually anything acknowledged by the greater medical field as "Exhaustion Sickness," yet this was the "diagnosis" I received in high school when I was so tired I would fall asleep standing or even walking and had vague "unwell" symptoms. I have always felt tired--nearly every day of my life from high school on. I have struggled with headaches since elementary school. In high school I started have some joint problems on and off which I associated with sports at the time and the results of past injury since. I still recognize that could actually be the reason for them. I have struggled with Major Recurrent Depression. About two years ago, after my second child was born, I developed a skin rash which I still have and went through a period of hair loss. My hair has mostly grown back now, thankfully, though the rash remains. A dermatologist indicated it was a treatable rash, however it never went away completely and leaves scars. Most recently, about three months ago, I started having problems with my arms. It began one day with a hot feeling--not externally, but like something was heating up from the inside of my forearm. Since then, I've had what feels like muscle and joint pain every day in my hands, arms, and shoulders. Sometimes my neck hurts. Other joints (ankles and hips) still hurt intermittently but have been a bit more achy lately. I am on the computer many hours a day due to my job, so I initially suspected it was Carpal Tunnel, but that symptoms didn't quite match up and my NP confirmed it was not that. My maternal grandmother had and died of the autoimmune disorder systemic scleroderma. My mother exhibits many signs of auto-immune problems, including everything I have plus many other symptoms, but has never shown positive ANAs or been diagnosed as having an autoimmune problem. Based on my internet research of a range of illnesses and disorders, I am wondering if I have lupus. I realize you cannot make a diagnosis, but based on your experiences, does it seem like my symptoms could be consistent with lupus? I don't have a regular doctor, just an NP group I go to only when I absolutely have to see someone, so I'm sort of floundering for how to proceed. The NP did send me for neck and shoulder X-rays and a range of bloodwork, including the ANAs mentioned. If the ANAs are negative, would that automatically rule out lupus? I apologize if this post is at all inappropriate. Thank you for your time and thoughts.

03-24-2009, 09:32 PM
hi workebee,

welcome to you. yes, you are invited to share with us even without a diagnosis. there are many here that have not gotten a diagnosis, but symptoms and tests certainly indicate lupus. i am not familiar with what a NP program is. however, you really need to see a rheumatologist if possible. they will be able to run several tests that will help with the diagnosis process. also, you should keep a diary of the different symptoms that you experience. diagnosis of lupus requires that you meet 4 of the 11 criteria. these criteria are explained in the "sticky" portion of this forum.

i hope you will be able to see a rheumy, and please call of us for any questions that you might have.

03-24-2009, 09:47 PM
Hi Mountaindreamer,

Thanks very much for your response and for giving me some direction. I will begin working on getting into a rheumatologist tomorrow. Sorry about the confusing acronym--NP is Nurse Practitioner.

03-25-2009, 04:27 AM
hi workerbee,

i too see a NP (now that i know what it means), but she does not diagnose or do anything without my rheumy's instruction. i do not know what your insurance situation is, but i do know that a "good" rheumatologist" is crucial to lupus diagnosis and treatment. I hope you can find a good dr. that you feel confident in their treatment. please put yourself at the top of the importance chart, because lupus is an extremely difficult disease, but is manageable......well, sometimes.

while waiting for dr. appt., there are a few things that you can do to help with possible flares. stay out of the sun, or wear sunblock (at least 35 spf), wear protective clothing and hat, get plenty of rest, and just be good to yourself. wish i could help more,

hope you have a good day today, let us know about your dr. search.

sick n tired
03-25-2009, 06:48 AM
Hey Workerbee,

In answer to your question, the ANA is used as a diagnostic tool...some people with lupus can and to come up with negative results at times...The other marker would be to take a dsDna test, too. Also, there are some people who have the condition and never have a positive Ana.

You are definately welcome on this forum. Many here are in the diagnostic stage, too. Some have been diagnosed and then had it change many times, while others do indeed have a dx of Lupus...many have combination dx...what I am trying to say is, Welcome to the forum...you are one of us now.

Angel Oliver
03-25-2009, 07:18 AM
Just to say hello and welcome and yes we are glad you found us. I hope they give you a diagnosis soon and 'the right one'. So frustrating, we all know here, we have been or going through it ourselves.

Sending you gentle hugs