Autoimmune - Advice?

Posted by tobequitefranklyn @tobequitefranklyn, 2 days ago

So my therapist recently suggested that I (23f) attempt to connect with fellow people dealing with chronic illness (particularly in the realm of autoimmune diseases/disorders) because of the frustration that I'm currently dealing with pertaining to my symptoms, potential diagnoses, etc.

Anyway - here's the situation. After almost four years of experiencing a sudden onset of symptoms - such as tachycardia, dyspnea on exertion/feeling like I can't get a deep enough breath, unexplained weight gain, excessive sweating/inability to regulate temperature, more recently some upper back pain and cracking joints, general fatigue, etc. - I'm finally in a place where I have a decent enough job and health insurance that I was able to get a rheumatology referral.

I went to the rheumatologist, and, after speaking with her for all of ten minutes, she told me she didn't have a very high suspicion of any autoimmune disorders. And as the blood tests that we did that day started coming back normal one at a time, that initially seemed like a fair assessment. Totally in-range thyroid, rheumatoid factor, CMP (except for ever-so-slightly low Carbon Dioxide, but I was told not to worry about that since it was barely out of range), C Reactive Protein, Sed Rate, and CBC+PLT+DIFF. But then my AntiCCP came back through the roof. For reference, a negative AntiCCP would be less than 20 units, and a "strong positive" would be anything greater than 59 or so. Mine was 133. In short, we're now looking at Rheumatoid Arthritis.

Honestly, at first, I was actually rather relieved that we at least had a lead. I'd been diagnosed with dysautonomia and IST at my cardiologist a little over a year ago, and my pulmonologist and I discovered about nine months ago that my windpipe is very narrow; but we couldn't really determine a reason why for any of these things. So I thought that maybe RA could be an explanation. But now I have all my specialists telling me that they don't really know if RA would be causing my specific symptoms or not, since RA is more about joint inflammation (from my current understanding).

In terms of testing I've already done, all my EKGs/ECGs always come back clear. My latest exercise stress test was technically fine (even though I felt like I was dying the whole time) - I just had diminished exercise capacity, increased wall motion, and my left ventricular wall segments showed thickening. A chest x-ray I had a while ago showed clear lungs. I just recently did x-rays of my hands and wrists, and there's no joint erosion so far. I did a PFT with pulmonology last year, which is how we found out about my airway being narrow; and I just did a repeat PFT that I'm currently waiting on results for. I'm also waiting on results for a sleep apnea study (if this is relevant, my left leg has been Charlie-horsing quite frequently lately, especially in the middle of the night). I've had a tilt table test done and it was normal, so this probably isn't POTS.

Also, I don't know if this is important, but I run out of breath/sweat very easily even when doing mundane tasks like dishes. Going up stairs is especially difficult, even just a single flight. Movement makes me feel overheated, even in the winter. I'm currently on a beta blocker, but my heart rate still gets higher than I would like when I'm moving at all.

Since I'm already in the thick of medical things, I want to ask my rheumatologist for some follow-up tests to rule out any other possible autoimmune disorders, because I want to make sure we're covering all our bases, since the ways in which my body is malfunctioning on a daily basis still don't make total sense to me. I've been doing some research and thought about asking about myositis, but I'm just not completely confident in advocating for myself at this point, since I feel like I still don't really know anything. I'm also wondering if y'all have any other suggestions for other possible problems I could pursue asking about? I'm just confused and stressed out and a little sad.

If you stayed this far - thanks for listening.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Welcome @tobequitefranklyn, Dr. Google can lead you down a scary path and make anyone stressed out and confused. The one thing I can say is that you are not alone and I'm sure there are others here on Connect that can relate and share similar stories. It sounds like you are already trying to learn as much as you can and become a better advocate for yourself. While you wait for other members to respond, you might find it helpful to read through the following discussion to learn what others have shared.

-- Navigating conflicting medical opinions to be your own advocate.
https://connect.mayoclinic.org/discussion/navigating-conflicting-medical-oppinions-to-be-your-own-advocate/
Do you keep a journal of your symptoms and a list of questions to ask your rheumatologist?

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@johnbishop

Welcome @tobequitefranklyn, Dr. Google can lead you down a scary path and make anyone stressed out and confused. The one thing I can say is that you are not alone and I'm sure there are others here on Connect that can relate and share similar stories. It sounds like you are already trying to learn as much as you can and become a better advocate for yourself. While you wait for other members to respond, you might find it helpful to read through the following discussion to learn what others have shared.

-- Navigating conflicting medical opinions to be your own advocate.
https://connect.mayoclinic.org/discussion/navigating-conflicting-medical-oppinions-to-be-your-own-advocate/
Do you keep a journal of your symptoms and a list of questions to ask your rheumatologist?

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Thank you for the reply! I actually am about to start a list of questions/symptoms/etc. when I get home from work. I thought it might be a good idea too, as my next follow up is in a few days.

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Another reference:
Cytokines are signaling proteins that help control inflammation in your body. They allow your immune system to mount a defense if germs or other substances that can make you sick enter your body. Too many cytokines can lead to excess inflammation and conditions like autoimmune diseases.
Cytokines are so essential to your immune system that they play a role in most conditions and diseases that may affect you. Typically, cytokines help keep you infection-free. If your immune system releases too many cytokines — in response to an infection or treatments like immunotherapy — you may develop cytokine release syndrome (CRS), also called a cytokine storm. You may develop various symptoms that affect multiple body systems. CRS can be life-threatening without treatment. Too many cytokines can create a heightened inflammatory response. Too much inflammation can damage tissue and lead to diseases and conditions, including:
• Autoimmune diseases: With autoimmune diseases, your body’s immune cells mistakenly attack healthy cells.
https://my.clevelandclinic.org/health/body/24585-cytokines

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I’m wondering if Sjögren’s has been ruled out? About half of those diagnosed Sjögren’s present with Dysautonomia, which you’ve already been diagnosed with. Many struggle with body temperature regulation and breathing issues. Here’s some additional info:
https://sjogrens.org/blog/2023/dysautonomia-in-sjogrens
Myositis affects the muscles and your Creatine Kinase and Aldolase be elevated. There are specific antibodies your rheumatologist would test for if Myositis is suspected. Best of luck.

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Boy, I sure can relate to what you’re describing, but I’m especially sorry for you because you’re young and facing this. I was 70 when this sudden onset of symptoms occurred two years ago. Since then I was diagnosed with Breast Cancer, had two surgeries and radiation. My neurologist thinks the cancer is what brought on my symptoms. But unfortunately the shortness of breath and dizziness when upright hasn’t gone away. Ugh. So for me, they call this Autonomic Neuropathy. Like you, my PFTs , CT scans, EKGs, all were clear. The tilt table test showed neuropathy but that was it, the skin biopsy was clear. I feel for your frustration. It seems I’ll just have to live with this— but heck, at least I’m 72.

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Have you been checked for heart failure? It isn’t what it sounds like necessarily. What is your ejection fraction? Heart failure can make you really tired. You need an ultrasound to diagnose it.

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@mayo99824

Have you been checked for heart failure? It isn’t what it sounds like necessarily. What is your ejection fraction? Heart failure can make you really tired. You need an ultrasound to diagnose it.

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My latest ejection fraction was 60%, so pretty normal. I would think they would have caught heart failure during my latest exercise stress test/echo if that were it, but if there’s something I’m overlooking, I’m willing to research further!

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@tobequitefranklyn

My latest ejection fraction was 60%, so pretty normal. I would think they would have caught heart failure during my latest exercise stress test/echo if that were it, but if there’s something I’m overlooking, I’m willing to research further!

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As a fellow autoimmune person I have recently started taking "Turkey Tail Mushroom" mycelium by Paul Stamitz, (he's all about the science). It is supposed to "produce a balanced immune system". I will let you know how it goes.

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