1. < Autoimmune Diseases

Worried about upcoming rheumatologist appointment

Posted by mas0415 @mas0415, Dec 2, 2023

I am 38 years old and have a long history of strange symptoms (going back 15+) years. Mostly struggling with skin rashes and GI issues. About 5 years ago I had a bad flare up and saw a rheumatologist who completely gaslighted me and left me in tears. She told me it was all in my head and I needed mental health support. I then went to a holistic practitioner and was able to gain some relief and told myself I was going to be fine. She treated me for an imbalance of gut bacteria. Fast forward to this year, I have developed a burning rash on my left arm that will not go away. I saw an allergist who told me it was not eczema and she could not help. In September I ended up in the emergency room with pericarditis. I have developed numbness and tingling in multiple extremities that they have yet to be able to pinpoint a source for. I had a MRI and EMG that shows a likely pinched nerve in my neck but does not explain the numbness in my feet. I have developed pain and inflammation in my knees, elbows, wrists, and feet. My elbows look and feel bruised and they have been like this for weeks. I saw a rehabilitation specialist who diagnosed me with multi site bilateral tendinitis and has put in a referral for a rheumatologist. I also recently developed mild Raynauds syndrome and livedo reticularis around my elbows. I am so tired all the time and have to force myself to continue to eat. My concern is that the blood work that was ordered at the time of this referral came back all normal besides elevated segs on my CBC. Negative RA factor, negative ANA, normal inflammation markers. I am so scared that the rheumatologist will just dismiss me once again. I don’t know what is going on but something is clearly wrong and I need help but I don't understand how nothing is showing up on my blood work. I don’t want to be sick, I don’t want a chronic illness, but I want someone to believe when I say I am having pain and can’t live like this. I just wonder if someone else may have had a similar experience where blood work “looks normal” but they were still able to get a diagnosis. I have added some pictures of my rash and joints. Thank you.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 12, 2023
In reply to @mas0415 "Thank you to all that have replied. I have gotten a bit behind in responses but..." + (show)
@mas0415

Thank you to all that have replied. I have gotten a bit behind in responses but please know I appreciate all the feedback and support. As an update, I have an appointment with a rheumatologist at the end of February but have asked to be put on a cancellation list in the hopes of getting in sooner. I just returned from the eye doctor. I have been prescribed steroid drops for inflammation in my right eye. When asked what the likely cause was, he said maybe allergies? I asked if it could be caused by an autoimmune condition and he said certainly but he wasn’t going to speculate on that as it’s not his field. I am seeing my primary care physician on Friday and plan to ask for a dermatologist referral, but in the mean time…the mystery continues…

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@mas0415 Good for you, getting these appointments! Getting out there and advocating for your own health can be tricky, frustrating, and nerve-wracking. But it makes us feel good to make forward progress.

I hope to read soon that you got on a cancellation list and appointment is soon, along with a referral to the dermatologist. You, go!
Ginger

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Dec 12, 2023
In reply to @mas0415 "Thank you so much for the support and kind words. I have actually been doing physical..." + (show)
@mas0415

Thank you so much for the support and kind words. I have actually been doing physical therapy for my pinched nerve and the team has been so supportive and has encouraged me to be vocal to my doctors. The referral was sent last week and I have yet to hear from the rheumatologist office. The plan is to call and follow up tomorrow, hopefully they will give me a date!

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@mas0415 Autoimmune diseases or any ‘strange’ condition needs a very sharp doctor to diagnose it. If you continue to have problems or don’t get answers, you might try going to a major medical center or university medical center. There should be several in your state. That’s what I had to do when I got my AD disease. None of the doctors at my hospital knew what was wrong and couldn't understand the MRI. My husband contacted the university hospital about an hour away. The doctors there were able to guide the local doctors in getting me stable. As soon as I could travel, my husband took me to the university hospital, thank G-d!
Do some research now so you are prepared. Would that be a possibility for you?

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marymaryoregon | @marymaryoregon | Dec 12, 2023

Here are two more cents to throw in! I have abandoned the idea of ever getting a diagnosis. That’s not entirely true- I have a positive ANA test and I have symptoms and I have a diagnosis code that providers can put on my chart. But… it’s actually kind of a made up thing because there isn’t actually an agreed on criteria for it - it’s this grey area when someone has symptoms of a connective tissue disease and has at least one lab value that supports it, but they really just don’t actually have enough symptoms or organ damage or weird labs to really diagnose them with an actual connective tissue disease. Basically, I’m not (yet?) broken enough for a diagnosis…? This obnoxious grey area is termed undifferentiated connective tissue disease, and I kind of hope I don’t get more symptoms and end up elsewhere.

Also- the treatments at this point are the same, so I’m not missing out on anything.

The point of me sharing this is to say this- you know that you have inflammation and that you have pain (and insert your other top symptoms here). So, my big question (which if I were at your visit with you) would be this: what is the plan for addressing my widespread inflammatory pain?

I spent so much time and energy trying to figure out “what is this? What is the overarching cause for all of this?” And none of that energy or time ever actually helped me feel any better. And… all those conditions I was looking into and thought I had didn’t have any cures anyway, they were all about managing symptoms. So here I am with practically normal labs hoping I can just manage my symptoms and stay mostly OK for as long as possible.

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1 reply
pb50 | @pb50 | Dec 12, 2023
In reply to @marymaryoregon "Here are two more cents to throw in! I have abandoned the idea of ever getting..." + (show)
@marymaryoregon

Here are two more cents to throw in! I have abandoned the idea of ever getting a diagnosis. That’s not entirely true- I have a positive ANA test and I have symptoms and I have a diagnosis code that providers can put on my chart. But… it’s actually kind of a made up thing because there isn’t actually an agreed on criteria for it - it’s this grey area when someone has symptoms of a connective tissue disease and has at least one lab value that supports it, but they really just don’t actually have enough symptoms or organ damage or weird labs to really diagnose them with an actual connective tissue disease. Basically, I’m not (yet?) broken enough for a diagnosis…? This obnoxious grey area is termed undifferentiated connective tissue disease, and I kind of hope I don’t get more symptoms and end up elsewhere.

Also- the treatments at this point are the same, so I’m not missing out on anything.

The point of me sharing this is to say this- you know that you have inflammation and that you have pain (and insert your other top symptoms here). So, my big question (which if I were at your visit with you) would be this: what is the plan for addressing my widespread inflammatory pain?

I spent so much time and energy trying to figure out “what is this? What is the overarching cause for all of this?” And none of that energy or time ever actually helped me feel any better. And… all those conditions I was looking into and thought I had didn’t have any cures anyway, they were all about managing symptoms. So here I am with practically normal labs hoping I can just manage my symptoms and stay mostly OK for as long as possible.

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Yea. There’s no cure whether one has your somewhat vague diagnosis or my rather specific one of moderately severe, seropositive Rheumatoid Arthritis. We both have pain, inflamed joints, bones, etc., and after the requisite entry level drugs that likely won’t be enough over time, we will receive one of a dozen or so biologic drugs that are miraculous for some, inadequate for some, and dangerous for a few.

So we balance symptoms, signs of trouble via things like spiking liver enzymes, and other signs of trouble caused by disease or trouble caused by treatment.

And we get up and do it again. One day the formula suddenly doesn’t work and you start a new drug.

Rinse and repeat.
[edited to say that I am not quite as blasé as I sound. If I have to have this blasted condition, I’m eternally grateful for a stellar rheumatologist who is part of the Duke medical system, and the aforementioned miraculous biologics].

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1 reply
mas0415 | @mas0415 | Feb 27 8:59am

I wanted to offer an update, for anyone that was following…I saw a dermatologist in January that biopsied the red rash on my arm. When I went back for the results two weeks later she said that she had personally spoken to the pathologist because the report was unclear/ conflicting. They determined that they were going to call it psoriasis with overlaying eczema/ dermatitis. She gave me a biological cream to use and wanted me to start Rinvoq (jak inhibitor, I believe) based on my other symptoms. I had to get more blood work and wait for an approval process to happen to actually get this drug. In the meantime (I was left waiting for weeks to receive an update about this drug approval and the call actually came while I was at my rheumatologist appointment ironically), I got in to see the rheumatologist. He was very different then the one I saw years ago that treated me horribly and after reviewing my results and examining me, he stated that he does not believe that I have psoriasis whatsoever and that I am the clinical picture of Lupus. He was unbothered by my past negative ANA results and told me to not start the Rinvoq, he was prescribing me hydroxychloroquine. I have just started this medication and am feeling hopeful for the first time in a long time. I go back April 1st to see how I am responding. He said we will repeat the ANA at some point, he is slightly concerned that without a positive result he may be limited in treatment options. I have been battling a roller coaster of emotions but am just thankful that someone finally listened and named the beast that I have been battling for so long.
Thank again for the support that so many of you offered when I came here feeling desperate and overwhelmed. I never knew that strangers words could mean so much. ❤️

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4 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 27 12:43pm
In reply to @mas0415 "I wanted to offer an update, for anyone that was following…I saw a dermatologist in January..." + (show)
@mas0415

I wanted to offer an update, for anyone that was following…I saw a dermatologist in January that biopsied the red rash on my arm. When I went back for the results two weeks later she said that she had personally spoken to the pathologist because the report was unclear/ conflicting. They determined that they were going to call it psoriasis with overlaying eczema/ dermatitis. She gave me a biological cream to use and wanted me to start Rinvoq (jak inhibitor, I believe) based on my other symptoms. I had to get more blood work and wait for an approval process to happen to actually get this drug. In the meantime (I was left waiting for weeks to receive an update about this drug approval and the call actually came while I was at my rheumatologist appointment ironically), I got in to see the rheumatologist. He was very different then the one I saw years ago that treated me horribly and after reviewing my results and examining me, he stated that he does not believe that I have psoriasis whatsoever and that I am the clinical picture of Lupus. He was unbothered by my past negative ANA results and told me to not start the Rinvoq, he was prescribing me hydroxychloroquine. I have just started this medication and am feeling hopeful for the first time in a long time. I go back April 1st to see how I am responding. He said we will repeat the ANA at some point, he is slightly concerned that without a positive result he may be limited in treatment options. I have been battling a roller coaster of emotions but am just thankful that someone finally listened and named the beast that I have been battling for so long.
Thank again for the support that so many of you offered when I came here feeling desperate and overwhelmed. I never knew that strangers words could mean so much. ❤️

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@mas0415 Such good news! Please continue to keep us updated on how things go for you. We’re all your cheerleaders! And, yes, strangers words can do so much! But we’re not really strangers; we’re comrades in this fight against autoimmune diseases!

REPLY
pb50 | @pb50 | Feb 27 1:43pm
In reply to @mas0415 "I wanted to offer an update, for anyone that was following…I saw a dermatologist in January..." + (show)
@mas0415

I wanted to offer an update, for anyone that was following…I saw a dermatologist in January that biopsied the red rash on my arm. When I went back for the results two weeks later she said that she had personally spoken to the pathologist because the report was unclear/ conflicting. They determined that they were going to call it psoriasis with overlaying eczema/ dermatitis. She gave me a biological cream to use and wanted me to start Rinvoq (jak inhibitor, I believe) based on my other symptoms. I had to get more blood work and wait for an approval process to happen to actually get this drug. In the meantime (I was left waiting for weeks to receive an update about this drug approval and the call actually came while I was at my rheumatologist appointment ironically), I got in to see the rheumatologist. He was very different then the one I saw years ago that treated me horribly and after reviewing my results and examining me, he stated that he does not believe that I have psoriasis whatsoever and that I am the clinical picture of Lupus. He was unbothered by my past negative ANA results and told me to not start the Rinvoq, he was prescribing me hydroxychloroquine. I have just started this medication and am feeling hopeful for the first time in a long time. I go back April 1st to see how I am responding. He said we will repeat the ANA at some point, he is slightly concerned that without a positive result he may be limited in treatment options. I have been battling a roller coaster of emotions but am just thankful that someone finally listened and named the beast that I have been battling for so long.
Thank again for the support that so many of you offered when I came here feeling desperate and overwhelmed. I never knew that strangers words could mean so much. ❤️

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This all sounds freaking awesome - and. Kudos for continuing down the road until you found right path.

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seniormed | @seniormed | Feb 27 7:14pm

The subacute type of cutaneous lupus does not always show positive ANA.
It may show special antibodies Ro and La (SSA and SSB.)
Hydroxychloroquine is a good therapy for lupus on the skin.
If a biopsy is not definitive it sometimes can be redone with immunofluorescent technique. Topical creams can also help.
Glad to hear you have gotten a diagnosis and treatment.
Keep working with your specialists and use your sunscreen.

REPLY
emo | @emo | Feb 28 12:03am
In reply to @mas0415 "I wanted to offer an update, for anyone that was following…I saw a dermatologist in January..." + (show)
@mas0415

I wanted to offer an update, for anyone that was following…I saw a dermatologist in January that biopsied the red rash on my arm. When I went back for the results two weeks later she said that she had personally spoken to the pathologist because the report was unclear/ conflicting. They determined that they were going to call it psoriasis with overlaying eczema/ dermatitis. She gave me a biological cream to use and wanted me to start Rinvoq (jak inhibitor, I believe) based on my other symptoms. I had to get more blood work and wait for an approval process to happen to actually get this drug. In the meantime (I was left waiting for weeks to receive an update about this drug approval and the call actually came while I was at my rheumatologist appointment ironically), I got in to see the rheumatologist. He was very different then the one I saw years ago that treated me horribly and after reviewing my results and examining me, he stated that he does not believe that I have psoriasis whatsoever and that I am the clinical picture of Lupus. He was unbothered by my past negative ANA results and told me to not start the Rinvoq, he was prescribing me hydroxychloroquine. I have just started this medication and am feeling hopeful for the first time in a long time. I go back April 1st to see how I am responding. He said we will repeat the ANA at some point, he is slightly concerned that without a positive result he may be limited in treatment options. I have been battling a roller coaster of emotions but am just thankful that someone finally listened and named the beast that I have been battling for so long.
Thank again for the support that so many of you offered when I came here feeling desperate and overwhelmed. I never knew that strangers words could mean so much. ❤️

Jump to this post

This is amazing news!! It’s a long road sometimes to get a diagnosis and sort through the treatment options, but we all deserve supportive and affirming care from healthcare providers who believe us.

I have a seronegative autoimmune arthritis, and it took 2-3 years to get diagnosed and multiple rheumatologists. I’m so happy for you that you found someone who’s a fit for you and be proud of yourself for persisting!

REPLY
needanswers7 | @needanswers7 | Feb 28 10:35am
In reply to @pb50 "Yea. There’s no cure whether one has your somewhat vague diagnosis or my rather specific one..." + (show)
@pb50

Yea. There’s no cure whether one has your somewhat vague diagnosis or my rather specific one of moderately severe, seropositive Rheumatoid Arthritis. We both have pain, inflamed joints, bones, etc., and after the requisite entry level drugs that likely won’t be enough over time, we will receive one of a dozen or so biologic drugs that are miraculous for some, inadequate for some, and dangerous for a few.

So we balance symptoms, signs of trouble via things like spiking liver enzymes, and other signs of trouble caused by disease or trouble caused by treatment.

And we get up and do it again. One day the formula suddenly doesn’t work and you start a new drug.

Rinse and repeat.
[edited to say that I am not quite as blasé as I sound. If I have to have this blasted condition, I’m eternally grateful for a stellar rheumatologist who is part of the Duke medical system, and the aforementioned miraculous biologics].

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Would you please share the name of the Duke rheumatologist you are happy with? I live in that area and cannot find a doctor with AIED experience. I need someone stellar!! Thanks!

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