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Discussion Starter · #1 ·
First of all I am 29, Okay, so my doctor said that I have lupus SLE and I had a high positive test at a 6. All the other tests were negative. I had my blood test done at the beginning of my flare March 10th and I didn't get to see my rheumatologist till today. I have had the worst flare in my life until a week ago (go figure) I took video records and photos of everything and kept a journal of all ailments including an ongoing fluctuation of temp from 98.1 to 99.7 every day for three weeks. Been in the hospital for swelling of my tongue and chest pain and stomach pains. Have been diagnosed with chronic gastritis after biopsy. I have all the signs and symptoms of lupus. Every one of them! Butterfly rash spreads to chest, fever, skin rash, hair loss, joint swelling and extreme fatigue/pain, obvious Raynaud's, dry eyes and mouth caused teeth to decay, and now new symptom of swelling of the white part of my eyes with yellow dots and redness spreading to my cornea! My rheumatologist talked over me and asked all questions with an answer. For example, "so you don't have chest pain and shortness of breath?" I told him yes I do actually! He said that with every question!!! He checked my joints and my fingernails and that was all! He didn't even listen to anything I had to say or look at anything I had brought with me! He told me that my dsdna was high positive but since the other tests were negative, he was going to rule out lupus completely! He said I don't look sick and I show absolutely no signs of lupus! He didn't even check my purple toes with white fingernails! I cried when he left. He came back and said, something is wrong possibly heart disease, I think, but it's definitely not lupus. He sent me for blood work and a chest ray/ekg and left. I'm really struggling. Is this a bad rheumatologist? Should I find a different one? I haven't been able to clean or work for three months. I do feel a little like I might be in a remission except for the occasional swelling at night or after activity. Please help!
 

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Sorry you went threw all this.
Not all rheumatologists know and understand lupus fully. You need to find one that has the knowledge.
You have every right to get a second opinion.
He sounded like he was angry? Was this the first time you saw him?
Take care,
Lyn
 

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Hiya...not a very good consultation at all....my Rheumy has a tendency to do that too.... it is almost like they answer themselves with the result they want. The only time he actually got a shock was when my husband told him that I couldn't actually feed myself with a fork because my wrist wouldn't work properly ! Some are very nervous around these conditions and would rather explain it away differently so it will go away. It is amazing that he just discounted your anti dsna result.

I always say try and get a good Rheumy with autoimmune experience and recommended as there are so many out there misdiagnosing or not being confident enough in autoimmune diseases as they are so complex. Sadly your experience is not new or unique and far too common. Don't get too downhearted, just move on and find another Rheumy, but do some serious homework first. Keep up your diary...and go back and let your GP know how devastated the appointment left you...be honest and don't sugar coat it. Your Dr may have a good idea as to next step. In the meantime go for any tests you have been booked for...it won't hurt to get these done...it all adds to your information and knowledge.

Keep plodding on...you need some answers... if your x ray etc is clear, it would be interesting what conclusions your Rheumy could possibly come to then !
 

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Discussion Starter · #4 ·
thank you! Yes I called for the best in my area. Unfortunately my insurance doesn't cover it but I'm so desperate that I am willing to pay full price! He did sound angry with me and actually he said, "you have nothing remotely close to what I have". So I am guessing it had to do with that.
 

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Discussion Starter · #5 ·
I am going to tell my GP. I'm only mad because I am not getting treatment and I am suffering very badly. I don't want to have it I just know I do because I know lupus and I know my symptoms. I tried to show him my diary and he wasn't interested. He did see my photos of swelling but he looked away and said he didn't know why I was swelling. When he checked my collar bone (which was very swollen) he said it looked like muscle to him. I rolled my eyes and laughed sarcasticly quietly. I am almost willing to go tanning just to activate a flare just to prove to him! I'm so desperate. I only get the butterfly rash when I have a fever or stressed or from the sun or when I am overheated. I didn't even wear makeup. I'm starting to feel crazy. And the fact my family calls me a hypochondriac makes everything completely worse. I really appreciate your replies!
 

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Discussion Starter · #6 ·
See the thing that gets me is the fact that all of my blood tests have came back normal right? Except the high positive dsdna, but here the thing, they are mostly very very borderline normal. I am talking, off 2 numbers! That tells me something. Most have to do with my kidneys too (I've done my research). So on a scale 0.1-0.12 being normal range I have been at 0.11 or 0.0 on almost every test! So I know something is there and it's not right! So I feel like if it's still within their normal readings they are simply ignoring them completely
 

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Hi

I have had my share of dismissive Rheumy's 3 in total. Now I have found an excellent one. All my bloods are negative ANA,antidsdna everything!. Mine was a really weird case caused by travel vaccines. It is very important to get a good rheumy otherwise you will go in circles forever. I know last year I was nearly at a point where I couldn't work any more. I can now use a TV, laptop. This was not possible 4-5 months ago. I have responded well to treatment.

Kind regards
Mark
 

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It is best to go in and tell the doctor you think you have lupus. That would only set them off.
It is like someone coming to us and telling you what, how to do something differently. That would set us off too.
It is best to say something like.... do you think something autoimmune is going on?
Take care,
Lyn
 

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Discussion Starter · #9 ·
My doctor told me that I did have lupus, I didn't say anything at all about it. I found another doctor for a second opinion. Hopefully this one will actually listen to me and look at me and my results a little better. I was expecting at least an hr appointment with my rheumatologist, this one only saw me for maybe 15-20 min. and only checked my joints and fingernails.
 

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I had an interesting conversation with my Rheumy yesterday who said he is allowed 10 mins per follow up consultation on the NHS but he needs an hour ...and a new patient even more time.
Sadly most Drs don't have the luxury of enough time to actually get to the bottom of things...which is daft, it would save a lot of time and money for the medical services if it was sorted out better in one appointment.....there would be less emergency care needed and less time to diagnosis/treatment and settling our bodies down...less effects from ongoing rampaging disease on our bodies/organs etc and so therefore less longterm care needed. Blindingly obvious to me ! Hope you get a better appointment next time round....keep plodding on....
 
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