Hi everyone, I finally had the appointment yesterday and have to say it went just okay. I tried to prepare but ultimately I guess I wasn’t prepared enough because she ended up asking me questions like, “ what were the symptoms you had when you went to the other Rheumatologist?”
I have a hard time remembering alot of things in general and with this question among others, I let my anxiety get the best of me, felt that she was siding with Dr. Lee which I realize now may not have been the case.
Long story short, she goes by the American College of Rheumatology diagnostic criteria and doesn’t care much about genes associated with lupus. That I have some worrying symptoms but as others have mentioned, do not fit the criteria for a complete diagnosis of Lupus. So I am to get more testing done and then see her in person for a follow up.
I did find out that the mouth ulcers associated with Lupus are not painful and on the gum area; mine are soft tissue and my rashes may not be associated with Lupus. I will post a picture though. I get alot of rashes (not butterfly or discoid or blistery) and I wouldn’t say it’s a sunburn either, I tend to cover up and add sunscreen. My IgE is actually low but I do have dermatographia.
Now that I have calmed down and learned about the ulcers, I am not sure if I am even close enough to the range of possible lupus. I have high ANAs (highest 1:320) homogeneous, five genes I believe 3 or four that are homozygous, fatigue (normal thyroid levels), continual anemia (for which I supplement and if I don’t I become anemic again) muscle aches (calves and sometimes arms) and what feels like being warm but no fever, Paresthesia and small fiber neuropathy, forgetting things and word finding, randomly bouts of vertigo, Raynauds, and IBS and Autoimmune Gastritis, mouth ulcers (but painful), hairloss but no alopecia areata. My platelets are most often between the bottom range and 100k, paranoia and anxiety at times. Mild arthritis in neck and lower back (i think osteoarthritis though)
I’m not looking for advice on supplements or Lyme disease so please do not mention them. I’ve researched quite a bit, thank you in advance, I’m just trying to get answers but not for remedies.
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JennaShi
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I don’t have a diagnosis other than misdiagnosis and have an appointment in a couple of hours with my neuro Wizard to prep for so can’t stay here long. Just wanted to lend some support and say,”Welcome to the diagnostic wilderness!” We all have some funky ish and have some wisdom to share from our journey. I’ll be back when I can. Hang tight!🦋🍀💐
I think it is good that you will have further testing and see the rheumatologist so that she can examine you. You do present with a confusing picture. You asked for thoughts. My thought is that unless the rheumatologist sees blood work consistent with lupus and inflammation in your joints, lungs, kidneys,heart or skin she may hesitate to diagnose lupus.
You are really struggling with fatigue and other symptoms. You might want to ask what she attributes that to.
The photosensitivity issue is very tricky. Just got back from a dermatologist for a cosmetic procedure. Showed her a photo of a facial rash after a sunny vacation. She waved it off as « could be the photosensitivity, could be your rosacea, could be a combination. » And I have confirmed photosensitivity. So many things enter in - sunscreen, citrus, allergies. If your labs and exam show lupus or lupus-like illness, you will need to stay out of the sun.
At this point you will have to wait - the hardest part - for more information so that the doctor can see the whole picture.
Thank you Kay, I am grateful for this opportunity to talk with her and get further testing done. Thats a good question, I will be sure to ask her, and try not to forget! After looking at the criteria, I was a bit shocked and didn’t realize how complex the process was. From what I gather, this is has been decided upon by multiple doctors in different countries.
I’m glad you got confirmation with your dermatologist about photosensitivity. Have you had to take extra measures to stay out of the sun? Have you requested a biopsy? I didn’t know they do this. I’ve only been to a dermatologist once but for other matters. Showed them to my allergist but my IgE was low and allergy blood tests show nothing positive🤷🏼♀️. You're right, it can be hard to narrow down what the cause is as we put things on our face, eat things, outside environment etc.
Yes, more testing and wait. My neurologist hasn’t yet come to the answer for my small fiber poly neuropathy So will be curious to see if it plays a role somehow here.
The classification for lupus has been revised several times. It is mainly for research purposes. But it still does set a standard for diagnosis and informs doctors’ thinking. From what I understand a patient has lupus if a doctor says she does. Of course, we hope that doctor is trained!
You are right that it is complicated. I think most rheumatologists agree with what is and isn’t lupus but patients take time to evolve. So a doctor can have an opinion at one visit but another see the patient when she is full flare with positive labs.
The new classification is pretty easy to understand. You can see that all blood tests and symptoms are not equal. Patients with a lot of points are probably pretty easy to diagnose, while the others less so.
Yes, it will be interesting to see what is causing the small fibre neuropathy. I hope you mentioned that to the rheumatologist. It certainly can happen in autoimmune disease.
As for my rash, it wasn’t really significant. She said it didn’t make any difference whether the sun caused the rosacea to come out or the malar rash. I have had the photosensitivity since diagnosis - nothing new. She prescribed a triple cream for rosacea and approved of my hat with face veil.
Years ago my rheumatologist wanted a biopsy of a rash on the bottom half of my face. The dermatologist did not want to do it because of the scarring.
Oh, the diagnostic classification is decided on by more than multiple doctors. It is a huge undertaking in which lupus experts - those from every specialty like hematology, neurology, nephrology, rheumatology - revise based on new data. Then they test to see how the new classification compares to the old in terms of sensitivity and specificity. There are always doctors who don’t like the new classification.
Many people have autoimmune disease without meeting lupus criteria. You may be in that category too.
I Didn’t realize how big of a deal this was. It sounds like quite an undertaking! The process of deciding whether new information fits and talking/ discussing with other doctors around the world who work in different departments to come to an agreement! I can see a bit better now why they don’t treat for prevention as it would be difficult to know whether someone actually has Lupus if they don’t show signs. I still wish we had other testing to be able to do that but perhaps that might be a goal in the future; our system is not set up for that kind of thing.
I’m glad that you didn’t need a biopsy and already had the photosensitivity diagnosis. Even though they differed in opinion, it sounds like you have a good support team of doctors. From what I’ve been learning, Lupus is already a tough thing to deal with, and if you can get your symptoms acknowledged without the procedure that would be ideal. I’m glad you’re taking care of yourself and have a good sunscreen and hat for this summer. It’s sure been hot over here in CA!
Neurologist was looking into testing for Amyloidosis as the cause for my small fiber poly neuropathy and I was weighing the possibility of a lip biopsy until I stumbled upon the autoimmunity genetic report with Dante Labs. I haven’t had any positive results that have so far led to looking into Amyloidosis and thankful we may not have to do the lip biopsy. Yes, I did tell the Rheumatologist and sent the results her way. I went today to get the blood work and requested and x-rays. She messaged me to let me know that the xrays were normal but still wants to see me for follow up to help figure out what is up with my hip. I am told bursitis doesn’t often show up on xrays so we will see!
It sounds like you have found a supportive and thorough rheumatologist. She wants to get to the bottom of your problems.
The only test that was positive with me when I was sent to a rheumatologist was the false positive test for syphilide. They don’t even do that test any more because a Graham Hughes discovered the anti-cardiolipin antibody that was causing the positive test.
So sometimes they have to keep testing as they are doing with you, Yes, a perfect test for these autoimmune disease would make all the difference!
I agree, this is the first rheumatologist and I’m glad she wasn’t put off by that.
Ah, I think Ive heard you and others mention it in the other group! I’m glad they tested you further and not just took that as a positive. Can I ask what made you decide to test further or how did you decided something else was wrong? Do you have your personal story on your profile? I would be interested in reading yours sometime if that’s alright with you.
I started out with general symptoms of fatigue, muscle aches, GI issues and low grade fever. I was anemic and had a high sedimentation rate, so my doctor thought something inflammatory might be going. After another doctor diagnosed me thyroiditis, he sent me to a rheumatologist. The false positive test for syphilis was part of the rheumatology work back then. I was only told I had a tendency toward autoimmunity and would be watched.
Not too long after, I got a rash on my face after sun exposure with low grade fever and slightly swollen knees. Then the rheumatologist diagnosed undifferentiated connective tissue disease.
The ANA was not positive for several years. Anti-cardiolipin and anti-LA were positive at some point.
Thank you Kay, it sounds like your doctor listened and suspected more was up with you than your thyroiditis. That’s wonderful that he referred you and I can see what you mean by things changing and it sounds like your body started to change before your bloodwork. I’m glad that your doctor took note of all these things and sent you to a rheumatologist.
I can look back and see somethings changing too: poly neuropathy, IBS. I am hoping it’s a step in the right direction.
Yes, my internist said I had a “viral syndrome” but he was checking for things I didn’t even understand at the time - haptoglobin level, reticulocytes, ESR, blood in the GI track. I do remember him seeming concerned about the anemia. It is all detective work! I just wanted to feel better.
You hang in there. I am sure you have a good detective.
That is great detective work, I’m glad it all paid off! There are quite a few different causes and find it interesting that that he took special interest in your anemia. In contrast, the first doctor I had kept telling me that mine was due to my heavy periods but after that was resolved (heavy period) i was still having anemia troubles. It all is very interesting. I just got some more results and wbc, rbc, and platelets are up this result so I will be interested to see what she says.
Jumping in with my penny and a half for what it’s worth. Diagnostic criteria come and go as KayHimm pointed out, but also pointed out that pretty much if a doctor diagnoses you and treats you for it, you have it. With that, here is the disclaimer: at times, when there is less than equivocal evidence (I.e. for lupus you need 10 pts and 1 major on one scale and the patient had 14 pt etc)
Sometimes AIDs take time to evolve and look like sero- RA but then get more symptoms to become PsA or Lupus. You want the doctors to hurry but they want to get the correct diagnosis 🙄🤷♀️Sometimes there is crossover so it’s even harder to figure out. I speak from experience if you want to go read my posts. This year has been especially difficult but I got a provisional diagnosis today. One of fewer than 5500-6500 worldwide (that’s a guess) There are officially 120 cases in the U.K. I think about 600? in the US. I am still in the wilderness.
As far as rashes go, I have had a couple of raised itchy places on my hands in the last week. Not sure if it was from sun, hand sanitizer or AID. Another thought came to mind and that is my meds. Several of them list it as a side effect. Just a few things to check. You can always look up autoimmune rash images on google. But the only ones I can think of that have major rashes like that is my myositis/dermatomyositis has a shawl like rash/ photosensitivity kinda like that. OR you can always be patient and wait for the tests and dermatologist 🤔😄💭
Thank you Drunnerchick, I will go ahead and follow you!
It does sound like a more complicated process than I originally thought and agree that those that don’t typically fit the criteria or have alot of overlapping symptoms, can have a more difficult to diagnose properly. It is reassuring to know that from what you both have said that if a doctor diagnosed you, that’s what you have, unlike other conditions where other doctors you see may have differing opinions.
That is wonderful news, I’m glad you have a diagnosis! What do you mean by wilderness ? I will take a look at your profile. It sounds like you have a good Doctor who is supporting you and willing to look at all your symptoms and lab work. Kay and I were just talking about how it can be difficult to know what is causing the rash. I too get that itchiness on my hands and fingers. I have a follow up with the rheumatologist and will get to show her all my pictures of the rashes and results and hopefully she can figure it out. Maybe I should mention those, I’m not sure where I fit lol.
J- by wilderness, I just mean you can wander for years, seemingly in the same place because the scenery all looks so much alike (rheumatologist 1 told me I have X but now I had to see rheumy 2 who says no I don’t have X I have C for crazy 😜 train 🚂 get out of their office and see a shrink.) 3 months later you develop double vision, vertigo and have a fall that require 12 stitches on a head lac, so you get sent to a neuro who only sees brain 🧠 stuff and sometimes doesn’t know about the neuro side of AI diseases and so on, and so forth. Each time it spaces out appointments anywhere from 2-6 months, sometimes longer. If they could just get the patient and the 3 most likely specialists all together, it probably wouldn’t take an average of 7 years to diagnose Lupus.
Ah okay, I understand now. I agree and it sucks when that happens. Since each doctor often specializes in one thing (thyroid, foot, heart etc.) I can’t help but think that may be why they have a hard time seeing other options? Not to mention that some doctors may have trouble understanding how a patient feels because they themselves may be healthy, lack empathy, or can’t figure out why you’re not better and get frustrated?
I often don’t talk about my paranoia or Anxiety because I’ve seen how my friend was treated (horribly and brushed off). But I think anyone could have some sort of anxiety and or depression from not knowing why their body can’t do what it used or should/ not feeling well etc. i agree with you about the drs talking / coming together to figure it out. They are so busy! I’m sure there are some that would like to though.
It sounds like you’ve been on quite a journey through the wilderness to get to a diagnosis. I’m glad that you’ve got one and although it sounds like your not out of the woods completely, you’re heading in the right direction.
It takes so much energy, and so many Drs to get answers. I too have had alot of years of appointments. Getting answers is hard work after 7 years I am starting to give up, no longer got the energy. Can I ask, you say your thyroid was normal, did you have full panel of blood tests with antibodies?
Hi Muff, it sure does and am sorry that this has been quite a difficult road for you. I hope that you wont give up though, even though it’s been frustrating and energy consuming. Do you know any of these lovely ladies? Perhaps they can recommend another doctor for a different opinion? Not sure if you are in the US, but in California, there's Stanford and UCLA health. Both places I’m told are great options for those that don’t fit typical criteria.
Yes, that’s no problem, I’ve had the full panel with antibodies. I am post Graves’ disease (Diagnosed Graves in 2010) but have had high TSI and TPO antibodies for years. And have been hypothyroid since 2016 and as optimal as possible on Armor for atleast 2 years now.
No problem, I am sorry it’s taking along time. I hope that you wont give up though! I Don’t know if you’re already doing this, but I ask for copies of all my results and I’ve lived in different states. This helps with my memory and I take what I think may be relative what ever appointment I have and see if it helps.
I don’t know enough people with Lupus to say whether I agree with you but I will take your word for it as you probably do. I hope for anyone else, they are not struggling with debating on whether thyroid is causing the high ANA.
In my case this has been an ongoing debate for 1 or two years now (can’t remember at the moment) two rheumatologists are making claims that my high ANA is due to my thyroid antibodies. However, I argue differently as it has consistently rose and fallen and my tpo antibodies are still high (not to mention that I’m still optimal on thyroid medication and have been hypo since 2016). Thankfully I have copies of my labs and results of antibodies. If anything, it shows I have an autoimmune problem (ruling out that saying for myself that “anybody could have a high ANA”).
I’m sorry your appt. didn’t go better. I had one yesterday and ended up crying and feeling labeled a hypochondriac. Your symptoms are my exact image. If this isn’t bad enough, I have Lyme disease and you may want to be tested as well. That’s a whole other mountain to climb... but I have had Lyme for 12 yrs and recently diagnosed. The damage is done, but I’m still trying to get better. Sending you warm hugs and don’t give up! We’re in this together. God bless💕
I’m sorry your appointment didn’t go well either. I think that there are some people, including some doctors, that have a hard time as they haven’t experienced what alot of us have and it sounds like the doctor you saw yesterday is one of those doctors. I’ve heard lyme disease is very rough and am sorry it has taken so long to be diagnosed and that you have had alot damage done. I hope you are receiving treatment now?
My mom had MS and had also been bitten when she was a young adult. She sought treatment and we were tested as kids as it was believed to have been transferred through utero. We all received treatment and I haven’t since tested positive so it’s my belief that I no longer have lyme disease. I do appreciate your concern and hope that you take care if yourself and find a doctor who will listen and figure out how to better care for you and help you heal.
Good morning, JennaShi. 1) Have you been screened with labs for anti-tissue transglutaminase antibodies? 2) Have you used hair dye? 3) Any jewelry with nickel? I know I am all over the place here, but I see some similarities with my celiac disease pattern/neuropathy and with separate allergic reactions that manifest like yours.
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So Down in the dumps right now :o(
Misdiagnosed? 
London lupus center appt 
Malar Rash
