The rheumatologist confirmed on Friday that I have Incomplete Lupus. He's hopeful because I've responded well to medication and I'm meeting with my new hematologist today. I don't know how to feel. Is that normal? The people in my life are kind of falling into two categories. Those who are worried about me and the ones who are treating it like I said "Oh I have a cold."
One of them told me "Well you don't actually have lupus" Which the the doctor said isn't the case, that incomplete just means I'm missing some of the markers. Is this kind of numbness normal? For me and for the people around me?
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Morganslone
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What does your Rheumatologist mean with "incomplete Lupus"? Did he explain to you what he meant and also what medication does he talk of?
I can not understand what you mean with "I do not know how to feel. Is that normal?"
Also you talk of numbness. Where do you have numbness?
If you mean numbness when people does not have feelings perhaps. People do not understand this illness as we look so fresh and well. Let them read "Sticky Blood Explained by Kay Thackray.
I am from Sweden and I am sorry that sometimes I do not understand well enough.
Kerstin, it's not you. I am not understanding this either! Would like to help but I do not know what you are trying to ask.
Unless morganslone, you are saying you don't know how to feel because you are so miffed as to the diagnosis and it is making you feel helpless because it is overwhelming you? If that is what you mean by "numb" . I think if this is the case we all tend to initially feel this way because we don't know enough about it. As you stay on this very worthwhile site, you will gain more insight and come to terms with things.
Yes, it can seem like it is"nothing" and it can also be very worrisome. You aren't alone. Some here have a lot of symptoms and some have hardly any symptoms like myself, so it can go many ways.
Stick it out on here and we will answer any questions you post and you will get a better understanding of how you are doing individually, as well as, compared to the group. Either way you will get more Knowledgeable
All that being said, "WELCOME" 🤝👋 Be patient and check out some of the "question of the month" s and Professor Hughes' blogs. That will start to give you some insight with what's happening with you. Be strong and be patient. You can get through this!
I haven't heard of incomplete lupus but have APS and lupus like syndrome. When I was first diagnosed I felt lots of different emotions. I'd say we are all different and whatever you're currently feeling is normal.
I've felt lost and scared and angry and totally peeved off. I'm sure this past year I've been through the whole grieving process. Your emotions will change and I'm sure you'll feel a variety of things.
As for other people, well, some of them are just stupid! I was told once 'it can't be that serious because it took the doctors so long to diagnose the condition' this was shortly after a TIA!
Hi do u have Hughes/APS ? U have spoken of Lupus but not Hughes.
I have Lupus (amongst Hughes & other conditions) and I've never heard on the term incomplete lupus and I've talked to lots of people and read a lot. Maybe that's a question for the lupus site.
Whatever condition u have is irrelevant in that they are conditions that cannot usually be seen by others There's no plaster cast...
I suggest u take back control of ur life:
1) u find out about the condition your self
2) print of a list of all symptoms
3) print off a body outline and mark on it how u feel, all ur symptoms.
4) think about what u need and want from those around u (home, work, social life, friend's, colleagues & family) then make a list.
May I be bold and make this statement:
Woman are keen to talk things through while men just want to get on and fix the problem.
Bearing that in mind when a man can't fix the issue they feel helpless and often withdraw. It's them not u. The way they r wired. I told my husband:
"Look u can't fix this (whatever the issue) but I'm a woman and that means I need to tell u at least three times - so just nod and give me a hug! Then I'll be able to get on with it!! "
So... Gain knowledge. Recognise your symptoms. The ... Educate others. Let others know what will help you.
During the 'coming to terms with it all' period, u will feel numb until u take control. So do that right now. Ur GP should be able to arrange counselling if u need it too
I have read a little from your previous questions and I have seen that you have had very bad luck with the Doctors who are not Specialists as you say.
I would like to know though if they have taken the three antibodies they take for HS/APS twice with 12 weeks apart?
If one, out of three, was positive and you also have symptoms, you should have a diagnose of HS/APS I believe.
"Lupus Anticoagulant" can often be mixed up with the illness Lupus/SLE , but LA is one of the three antibodies they test for HS/APS. Perhaps you have that positive?
Perhaps he or she thinks you are treated with Warfarin and you have Lupus/SLE. I do not know but anyway you need a better Specialist who can help you with this.
Can you talk to your GP, if you have one, as he could help you with a referral perhaps.
We understand here as so many members have had to fight and met with awful Doctors who say awful things as they think we make it all up and it is all in our heads etc.
Do not give up because there are Doctors out there waiting for you....... I am sure!
My very best wishes to you from Kerstin in Stockholm
I apologize it took so long for me to respond to everyone.
I was diagnosed with Hughes in 2015 after an inter-uterine fibroid caused severe and prolonged bleeding (per the CBC the day I was admitted to critical care I had less than half the blood in my body I should have) I had multiple pulmonary embolisms and, A DVT in each leg that went from ankle past my groin and one in my arm from phlebitis.
When the initial cause of blood loss, and my clotting was stabilized I was released from the hospital and placed on warfarin. I received my first referral to a hematologist who discovered I tested positive for factor 8 and Hughes/APS. I have had four positive Hughes/APS tests since then. (Testing all three indicators each time)
Things never seemed "right" after that. I brought up concerns to my then hematologist and was told that the things I was noticing had nothing to do with Hughes, things I've discovered since finding this board are actually common symptoms and issues that people with this diagnosis suffer. Fast forward me asking to have my ANA tested because I developed a rash across the bridge of my nose and cheeks. I've always had fair skin and flushed easily so I hoped it was rosacea but I wanted to be sure. The story of how I managed to get tested for Lupus is drawn out but once I saw my GP and requested it of her, she not only ran the test before I had left her office but had already began the process of getting me in with a rheumatologist. Several of my indicators (I have the paper work at home and I apologize that I can't remember them all for this post) were positive. I have the presence of ANA antibodies, though I only have 3 of the four common symptoms, but I have not developed any issues with my Kidney's.
The rheumatologist looked over my historic chart before the blood work he ran in addition to what had been collected before and determined there was enough evidence to place me on Plaquenil (hydroxychloroquine), not only due to the Hughes but the suspicion that I would test positive for Lupus or another connective tissue disease. He also suggested my INR range be brought from 2-3 to 3-3.5 due to my history of clotting. Fast forward a month to last week and he confirmed his suspicion that I have Incomplete lupus erythematosus.
(Because I know that it has been brought up before a quick statement on the other physician involved in my care now)
My former hematologist was not open to the idea and due to a break down in the doctor patient relationship following that request, I now have a new hematologist who, to steal a phrase I've seen on the boards several times is "on my team" to the point he has scheduled calls with each of my other doctors (Vascular surgeon, rheumatologist, OBGYN (due to the PCOS and it's tendency to make me bleed) and General practitioner), to determine what they all decide my best treatment plan should be. (At least something good came from all of it)
History done, my real question.
By numb, yes I mean emotionally. I don't feel anything. One one hand I have friends who are giving me condolences, they look like I've just told them I'm going to die this year (which I know I"m not) and they are worried and freaked out. Or I have my family who is acting like I've come home and told them I have the flu. It leaves me in a weird place where I don't know if I'm emotionally under reacting or over reacting. I have a tendency to just buckle down push through things, a trait I think will eventually serve me well with everything that is wrong.
Thank you for using the words grieving Wendy. I think that may be it exactly. I think I'm grieving maybe. I might be stuck in the denial stage for a bit while I take care of the necessary items that need to get checked off the rather large to do list. My living will, our financial plan in case I have to leave work, setting up intermittent fmla (for those of you not in the USA, FMLA is family medical leave act which means if you meet a certain set of conditions or have certain life events you can take time above and beyond regular sick time off work.) Setting up our home office incase I am forced to work from home. I have this huge list of things to do to prepare for worst case while I work with the doctors to try and figure out how we can get best case, I think I'm postponing how I feel. I apologize if the question was selfish, or I guess self centered maybe? I had one moment of freaking out where I started to cry and I had a family member tell me I was being over dramatic and I've not really felt anything about it since then.
And don't worry Lure2 about not understanding me :). I'm from the southern USA. Most people in my own country would have an issue understanding me at my best. When I wrote my first post I was upset and not thinking clearly. I'm sorry for causing confusion.
You do not have to apologize to anything. We know on this site how it is to not thinking clearly.
I suggest you buy "Sticky Blood Explained" by Kay Thackray and let your family-members read about how it is to have this illness. Kay has HS/APS herself and writes very good about the different symptoms. It is not quite new with the latest drugs in it but the symptoms we have are the same as we well know.
Good Luck to work with a Doctor who understands how to treat you!
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