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anyone with Lupus

baffledbbaffled Posts: 375
edited 06/11/2012 - 8:34 AM in Neck Pain: Cervical
I am having to see an RA/Spine Doc...there is a strong suspect that I may have Lupus. I was just wondering if anyone here has it - what were their symptoms, what type of treatment plan and so on.

And did this effect your cervical in specific. My doctor feels these are two seperate things. And the Lupus antibody test may not turn out to be lupus after all.

The problem is I have been in constant spasms from my bra line to my jaw line for 2 1/2+ years. Botox injections (4) in the trap muslce did absolutely nothing except to piss off the rest of the muslces that hold my head up.

And when I say spasms - I mean, the feeling like my muscles are being twisted around a stick kind. I have not had one break for all these years. The doctors don't believe the moderate herniation in c56 is the cause of the muscles - because it is not pressing on my spinal cord and my emg came back clear.

Just looking for some answers, explanations.

thanks ahead of time.


  • Hi patti, in my limited (very) knowledge that I can still remember, I thought that Lupus was more of a systemic condition (affects the entire body). I'm not sure that it only affects certain areas. I can't say for sure if this is true though so I don't even know if I should even be answering your post. My primary care doctor is strongly suspecting MS for me, part of the diagnosis of MS is a series of blood tests and I just heard last week that I don't have lupus. I hope you get the same results and I hope you are able to get a definitive diagnosis.

    Once you can get a diagnosis you can focus your energy on management, that's really a big turning point, a milestone, in this whole process.

    Spiney hugs >:D< >:D<
  • My Name is Linda and I do have systemic Lupus , was diagnosed in 2001 I believe, The symptoms I was having are swelling and very painful joints especially the knees, when I was diagnosed I was in a crisis, I was again tested after the crisis was over and it gave a neg result, the dr says that is why it is so hard to diagnose because by the time you get to the dr most of the time the crisis is over.They do what is called an ANA panel,anyway they put me on very large doses of Prednisone and that helped so much, they also put me on medicines to help with whatever the symptoms were at the time, you need to stay on top of this if it is. I can tell you that If I stay in the sun too long it will trigger a crisi, I have what they call a butterfly rash on my face.And my knuckles and hands stay swollen just about all of the time, when in a crisis it is very painful, but the way that the dr has handled mine is to treat the symptoms as they occur. With the exception of the prednisone, you will eventually get used to taking that. I pray for you that your test comes back neg. but remember if you are not currently in a crisis it may show a false neg,I have had problems with my kineys before and have had pluerisy in my chest several times also, my immune system is very low so I try to stay away from someone that is sick, you will find if someone just passes you by and has a cold that the cold will attatch itself to you. Please feel free to ask me any other questions you might have .Just remember this is my experience only and I am not a qualified dr or medical person to give you all the facts or to even tell you that this is what is wrong with you. I am just telling you of my experirences with this. Hope I helped you out a little , feel free to ask me anything I might have left out. Good Luck , and I will pray for you that it is Neg. Tweety
  • I have gotten a positive - mixed (pattern) on my ana test. The RA test was negagtive - the syptoms I exhibit are red swollen joints - hands and knees - so much i can hardly make a fist upon awakening. My knees are just cracky and swollen. I do have the Rhenoirds syndrome of numb fingers and toes with the slightest cold (like when swimming in the pool that is under 80 degrees). I have Graves disease (remission since 04) and Ebstien Barr when I was diagnosed with the Graves. I understand that having one or more Auto Immune makes you more susceptable for another.

    The unfortunate part is I work outdoors from March until November - constantly in the sun! I will have to wait and see in Sept when I see the RA/Spine doc. Just wondering what other's experiences are and wondering if this in effecting my neck.

    Thanks so much for sharing your story - I may need much more advise into the future - I will update when I have more details for me. I hope that you have been able to adapt to your lupus - it sounds like you have learned your triggers for crisis.

    thanks again.
  • Good luck and I will wait to hear from you, I have adapted to my Lupus and if you have it you to will learn what to and what not to do, I pray that you dont have it. It sounds like you have enough problems without it. Hope you have a pain free weekend and if you would like to talk to me feel free to pm me anytime I check my nessages often. Good Luck, I am going to add you to my buddy list so watch for the request, Talk to you later.
  • Hi Patty,

    When my new spine doc told me I had significant OA at the C1-2 level, almost all my reseach turned up RA. I did have several accupunture treatments that relieved a lot of the neck pain due to the muscle spasms. Because I wanted a second opinion, it took me 3 months to get appt. with a rheumy. Based on the 16 initial lab tests he did (many were sent to Mayo clinic and their satellite branches in the northeast) he was leaning toward lupus. My main complaint to him was swelling in my wrists, enlarged and red knuckles, I could not bend my fingers into a fist due to tight tendons, and dropping things. He started me on Plaquenil and Vit. D. on July 3rd, and the Plaquenil can take 2-6 months before effect is noticed. I just saw him this week and he now has added Reyaund's disease to the list. But he also was willing to try low dose prednisone and see if it helps. Low dose being 5 mg. a day. Within 24 hours I felt like a new person! My watch now hangs on my wrist like a bracelet, I can totally close my fingers into a fist, and my neck pain dropped to a one! My trap muscles feel better too! I am currently in PT and am getting a TENS unit on monday.

    Getting a diagnosis of lupus, or any of the 100 different kinds of autoimmune disease, can sometimes take years, so don't get discouraged. As long as you have a really good relationship with your rheumy, stay with him. There are a couple of great sites with lupus information and a superb book available by a leading doctor in the field.

    There are a few articles that discuss mixed connective tissue disease syndrome (with overlap of scleroderma, SLE, and polymyositis) that effect joints like RA, including the neck.

    I'm sorry to hear you are having such bad spasms! I think (and spine doc agreed) that neck pain/spasms are related to my neck pathology. I am already fused from C3-6, 6-7 is bulging but not pressing on cord.

  • Thank you all for your replies. Medicine - is as much of an art form and scientific....thank you for reminding me not to get discourage. Just when you think, well I have been patient - this thing should be wrapping up - I am reminded that I may be in for another long stretch of tests and so on.

    I have a full day 9/23 of xrays (extension and flextion series), cervical mri, RA doc appt and then end the day off with the Neuro-Surgeon. It is some way off - but since the travel to get this all done is @ 1 hour - it was great to get this all done in one day.

    My joints from head to toe can really scream - You gave me some hope regarding the trap muscle....oh to have that one relax would be wonderful. They even injectioned at 4 spots botox into it with no results - what is beyond that?!

    Thanks again for the ref sites and so on - information is always helpful. Question - do you Classical have the Butterfly Rash? - I have a rash - been there forever but it in on my chest area.

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