I Have “mild lupus IF AT ALL????”

I am stymied… I had to get a new rheumatologist (Harvard and Yale educated) for my lupus because I moved two hours from my former doctor of four years. I went to a new one very highly recommended by a dear, very intelligent friend  who is a doctor.

When I went to see him he had all my records, which he read,  but said he wanted to do his own work up  “to see if you even have lupus”. This meant a blood draw of 12 vials and a referral to a neurologist and pulmonologist. I was to call him after the blood work came in. 

I called in yesterday for the results.  The nurse checked w/him on the blood work and the reply was that the only thing of concern was my cholesterol which is off the charts and to speak to my primary about medication.
So that was IT..like the discussion was over..so i said…well, what about the lupus and a treatment plan for it and the prednisone, meds, etc?

So she went  off for quite some time to ask him  and came back and said  “the dr. said there were very minor changes and that you have very mild lupus, if that.” So I said well what about all this pain? And she replied, “Well I don’t know but that’s very good news. You know I think he just doesn’t want to say you don’t have it outright yet at this point. He wants you to decrease your prednisone from 15 mg to 10.”  Then he wants me to come in and discuss things once I see the neurologist and the pulmonologist!!!!

I know I should be happy  but.. then what IS all this weakness and pain and flares when I get an infection????????????  And what caused my stroke if I have a mild case of lupus?  

I read my previous doctor’s records which indicated I was an atypical case and had not responded to lupus medications. We had always discussed this fact. But he had never said what I found in the record, this hypothesis  that it was possibly somatization – that DREAD word meaning psychologically based symptoms-  but that he rejected that because of the history of  stroke.

So now I’m afraid I have the “hysterical woman” label even though I have these terrible symptoms and history…. Or, maybe I have something else even worse…

Your  objective thoughts.. please?


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12 Responses to “I Have “mild lupus IF AT ALL????””

  1. vanessaleighsblog Says:

    Hey you: Maybe this new doctor, as a new set of eyes, is not dismissing what you have already been through, but rather, acknowledging that you are doing better, at least on paper, than you had in the past.

    Without jumping to the conclusion that you are just hysterical, is it possible that you have some psychological/emotional stressors about this illness, that could have been creating additional physiological symptoms? I say that gently, because I am not doubting the fact that you ARE having physical symptoms; but it could be that the etiology is not only physiological.

    Which just makes you human, not hysterical……. what it means more importantly, and I know I am preaching to the choir here, is that the change is in your hands, to feel better, maybe even more than you think……

    I am sending big, gentle hugs, and I hope I haven’t offended you in any way…… 🙂

    Absolutely no offense taken at all! Vanessa, you have no idea how happy I would be to know that its a psychological etiology which I could clear up with therapy!!! I absolutely believe in the mind/body connection….but I’ve had tons of therapy and believe my major issues to be resolved…what disturbed be so about the new doctor was the cool delivery of his opinion through the nurse and my fear of being labeled wacko when doctors can’t figure out a diagnosis. I was married to an MD, have worked for them, and KNOW that’s how they operate…but I will see the specialists he referred me to, go with my husband to see him for his assessment and plan, then probably go for a THIRD opinion just to be on the safe side.
    Hugs to you as well,

  2. cordieb Says:

    Well, if it is somatization, then that will open a world of new possibilities for you. Don’t think of this possibility as being dread, think of it as a new beginning. A start in healing that which is really hurting. . . a new lease on health and possibly life itself! Put the past behind you and take one step at a time. It’s not necessarily somatization, it could simply be a miracle! Either way, it’s a miracle for you my dear friend. Grasp onto it don’t look back!!!

    Whatever the case, know that you have friends who will stick in there and listen and comfort you through it. Know that you are strong enough to get through this . . . there is a reason for everything and a lesson in all. . . it’s up to you to really delve deep to find it this time. Don’t give up on yourself! Life is banging hard at your door for you to take action to learn the lesson, thus the cure.

    Cordie, I agree with every word you said. I will take somatization or better yet a miracle over lupus any day! Pls. read my response to Vanessa. You are such a dear and wonderful friend. Thank you.

  3. viv66 Says:

    Right, have risen from my sick bed for a short time.
    First off, resist every attempt they may make to convince you that you are hysterical. Second, this new doc came highly recommended by someone whose opinion you value. Third…*hugs*. Fourth, they change the goal posts with medical conditions quite often, and are discovering new conditions that were previously thought to be mere variations or atypical presentations.
    My instinctive reaction is that this is GOOD news. It’s upsetting because it may mean you have been treated for something you don’t have. From a personal perspective, I have found that with my conditions(not similar to yours at all) but they have taught me to ascribe just about anything to those illnesses, so I find i tend to identify myself with my illness. If someone suddenly turned round and said, “You don’t have such and such at all” I would be upset. Very upset. First because I lose my way of relating to the world through the lens that illness gave me, and second because SOMEONE(and not me) got it wrong and I could have been suffering needlessly for years.
    The guy I see here for pain management is the best doctor I have ever met; he has the healer’s touch with people. His remit is to help with pain, regardless of WHAT is causing it, though he’s pretty savvy about most things. Right now, pain seems to be the issue at stake: what’s causing it and what can be done about it. Plus, pain is a relative thing; what is painful to one is merely uncomfortable for others. I passed out twice during a routine uterine biopsy in November; and I screamed the place down. Most women don’t. Now, I am a tough person but I feel pain acutely.
    Wait it out; pester for retests and raise the issue that you do not feel happy with the possible somatization label. You don’t have to agree with them.
    And once again, hugs. I’m going back to bed shortly but I’m logging in from time to time so email if you need to rant.

    Thanks Viv. Don’t worry, I’m not one to be a passive patient. I’m sure they have my chart labeled in red in every computer in the country!

  4. goldenamber Says:

    I want to hug you. I want to cry with you. No one knows this better than me. Everyone thinks this should be so joyous. This is not. This is really making you FEEL insane. Im here for you. You are not insane.

    Sending you the biggest hug….

    Thank you for understanding, and the hug, and for so GETTING me girlfriend. Mwah!!!

  5. LupusRanting Says:

    Dear sweet Psych — You are NOT a nutzoid patient. Your condition is not somatic. Despite the fact this doctor is Ivy League educated, your personal experience with this medical practice stinks. Nobody should be treated the way you were, trivializing your symptoms, and receiving his “verdict” from the nurse. Don’t second guess yourself. Regardless of his opinion, you were not treated with the compassion that every patient deserves. Shame on him.

    You might be feeling very vunerable and fragile right now, and I don’t blame you one bit. Give yourself enough time to regroup. Email me if you want to process and/or rant.

    Sending you hugs and a lot of support!!!

    Thank you sooo much lupusranting. Your empathy and anger for me feel so….good!!! I will keep you and everyone posted.

  6. autoimmunelife Says:

    Maybe you need a new doctor, considering how the office treated you.

    Also – Did he say this *JUST* based on your bloodwork? I’m sorry, but even the LFA says that’s not enough for a diagnosis…. and if he hasn’t seen you in a flare, I doubt that just reading your file would be enough for him to know the true severity of your symptoms (not saying the file lied, or you lied to the doc or anything, just meaning that sometimes you need to see a person to realize how everything actually happens!) On top of that, the labs…. well… for some of us they are pretty clear to indicate what our lupus is doing, for others of us – not so much. I know a couple people who say that when they are flaring their bloodwork looks normal, and when they are feeling fine the bloodwork comes back outrageously off from what it should be.

    You are so right, J. I just spoke to my PCP this morning who basically said exactly what you just did. Thanks for the support and the hugs. I need them.

  7. sannat98 Says:

    I know of someone that has been diagnosed with mild lupus, and she has terrible flares every now and then.
    The doctor should then be less quick to label it as somatization.
    Note that being diagnosed with a such a disease, with any painful disease, is stress, and stress can manifest into physical problems or in your case, exacerbate symptoms already there. That doesn’t equate to you being hysterical.
    I’m mad for you that he (Mr hotshot) didn’t have the courtesy to come and explain all of this to you. I hope if you continue to see him that such prickness is not maintained.
    Like everyone is saying though, if you indeed just have mild lupus, take it as a blessing.
    I’m sending you my love and my prayers

    Thank you sooo much sannat98! Don’t worry, if his prickness IS maintained I will find somebody else. Thank you for your love and prayers, and blessings to you as well.

  8. mssc54 Says:

    Sometimes doctors are like a deer tick. You have to grab their back side and yank their head out of where they have it stuck and squeeze them to get their attention!

    Thanks mssc54- What a refreshing male voice/style of support tucked into the chorus of female ones!

  9. vanessaleighsblog Says:

    Psychscribe: I am just checking in with you; you doing okay with all of this? I hope you are and wanted to send you some additional hugs and warm thoughts!!!!

  10. SanityFound Says:

    The more I read from everyone the more I realise just how fallible doctors are, I can’t stand them and to so many it is just a way of making a bleep load of money off people who count on them so that they can drive real nice cars.

    I hope that things work out and this doctor doesn’t just leave his statement as is but rather delves deeper into everything… sending you hugs hugs hugs!

    Thanks San…at this point have no more words on this….

  11. fibi Says:

    I’ve got to say that I’m with San on this one.. We can rely on the “expert” opinion way too much.. And in doing so, deny ourselves.. Big big hugs..xxx

    Thanks fibi…we shall see…

  12. Sarah Mendez Says:

    I am 22 years old and i fond out in January that i have mild lupus.

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