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Am I crazy for being concerned ??
Hi ! So I came here because ever since the end of August I haven't been feeling well. I have lupus & arthritis but this felt different. My neck felt stiff, I had a sudden sharp pain going from my ear to my neck, my body ached, temp was high, and unintentionally losing weight. My stool was also very loose and thin. Before you say "go to the doctor" I have been to more than one. My family doctor & my them rheumatologist have basically had me going back and forth from one to the other ever since.
My concern is because I've been feeling this way ever since my visit with the rheumatologist at the end of August. Two days after to be exact. I had the fluid from my knee drained and was given a cortisone shot. I got a call from the nurse practitioner herself asking me how I was feeling and if my knee was swollen/red/etc. which was very strange because they don't usually call me. I said no but that I've been feeling unwell and having neck stiffness & pain. She said "well we think the synovial fluid from your knee was contaminated" Being curious I looked at the results of the fluid culture and it said "rare staphylococcus aureus" now this was very strange to me and I decided to go to my family doc because it seemed my rheumatologist thought everything was fine. She ordered a COVID test which came up negative and told me I probably just had an upper respiratory infection even though I had no symptoms of that. My temp got to 101 and I tried calling to speak to the nurse practitioner at my rheumatologist office because she had told me that on the phone that if my family doc won't order a chest x-ray she would. All the staff there told me is that doc said there's no further tests to order. Now given I felt like absolute shit and had a fever I started crying because it felt like no one would listen. Eventually my symptoms got a little less intense so I forgot about it but the few things that never changed was the weight loss, my stool, and fatigue. My normal temp has always been 97.4 and now my normal seems to be 98.5 ever since I got sick. I have not felt like my normal self since and sleep most days and stopped working out which I used to love doing. I've now dropped 15 pounds ever since this started at the end of August. Recently I've been feeling worse and have had such bad body pain and my temp was 99.2 today.
I did get some blood work done though for my annual check up with my rheumatologist and everything was normal besides my sed rate which was 60 and my crp which was 55.70 mg/l Now, I had gotten these same tests done right when I started feeling this way and my sed was 21 and crp was 3.12 mg/l (which is already abnormal for me because my crp has always been 0.34 mg/l and only ever rised during a bad flare to 0.38 mg/l) My rheumatologist told me it seems that my current meds aren't working for my arthritis and she wants to put me on Humira.
Am I crazy for wondering if there's more to this than arthritis ??? I've never felt like this in my entire life (I'm 22 btw) and my blood work has never looked even close to that. They never did any tests to rule out infection even though my knee fluid said it contained " rare staphylococcus aureus" I just want to stop feeling like this and I don't know what to do. Sorry for the long post but I'm just desperate for answers and a solution and I don't want to go on Humira if my problem may be something like an infection or even something else. I just want some further tests done but they keep assuring me it's my autoimmune disease's. What are your guy's thoughts ? What would you do ?
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KateP1963, I'm so very sorry to hear how much you must be suffering and that you often don't get the answers you need... I hope it's ok if I share that there are people out there who are reversing auto-immune diseases. Yes, reversing them, completely... You won't hear it in the mainstream medical system because they don't teach *anything* about food and diet in medical school, and NO ONE makes money when people are well and healing themselves with food. But if you're up for it (I can't imagine how you feel day to day), do a bit of research and you will find functional medicine doctors, holistic health practitioners, and chiropractor type people who HAVE helped people reverse these conditions. It takes a lot of will power and a *very healthy* diet, but basically flooding the body with the right foods and nutrients can and does help people improve. I wish you all the very best.
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3 ReactionsHi @lidiana, this site is managed by Mayo Clinic according to the Terms of Use (https://connect.mayoclinic.org/terms-of-use/) agreed to upon registration. The Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/) outline rules of conduct that help keep the Mayo Clinic Connect community safe, supportive, inclusive, and respectful. Posts that do not follow the Terms of Use and Community Guidelines may be removed.
You can see all of your posts in your profile. Your discussions have not been deleted except the one that you and I discussed by private message and why it was removed. If you'd like to learn more about why and how we moderate as well as who are the patient volunteers, see this information:
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5 ReactionsI have clear understanding. My discussion and posts don’t violate anything. My deleted discussion was asking questions about where they felt they got help and what was their experience so I know where to go for medical help it wasn’t about Mayo. I’m not a scientist or have any afiliares with nobody=0. I’m a simple patient trying to get the quality of care and support needed/deserve by rights like any other human being. This supposed to be for patients to connect not to disconnect. I’m just saying the truth. 🙁 I’m actually surprised this comment is viewed and not deleted like this discussion on the picture. It’s probably just a glitch 🤷🏻♀️. Disclaimer: I’m not affiliated with this persons posts or what this title displays in this picture.
@lidiana I don't want to take this discussion off its original intended topic. Please send me a message using this form: https://connect.mayoclinic.org/contact-a-community-moderator/
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1 ReactionHi. I understand your concerns and feelings. But I don't have your diagnoses.
To resolve your concerns:
Remember to write down your specific questions for your Dr. Such as
1. Have you verified I don't have a bacterial infection?
2. What is the cause of fevers, we weight loss, etc
3. What are your conclusions about the reason for my very elevated sed rate, etc?
4. I feel I have greatly deteriorated after the knee procedure. Is there a medical relationship between this?
And at anything else you want to know. Bring the questions + note any answers briefly. Ask for further clarification of any answer you don't understand.
Also, join any national organizations for your medical conditions. You'll have access to accurate and clear information.
Wishing you a good recovery and peace of mind.
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2 ReactionsThis is what the results of my knee synovial fluid culture look like for context. If anyone understands it, please do let me know.
I'm not a Dr or Lab Technologist. THIS IS NOT MEDICAL INFORMATION. DO NOT RELY ON anything not from a Dr or Lab Tech.
But for the sake of discussion:
This is a normal organism found on the skin. General everywhere everyday Staph. 'Rare' refers to a rare - as in very few of them - organism found seen. Coag neg is good. It rules out one problem type. Not S etc rules out another problem.
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1 ReactionThere is a discussion ongoing here in the benefits vs problems of patient portal access to medical info without a medical discussion. This is a perfect example of how providing patients with uninterpreted medical results creates unnecessary and even significant distress for some. I'm sorry you are unnecessarily burdened with having to interpret medical results. I hope you share with your Dr how much distress you endured by not understanding what the significance of this was. Please develop a system with him for being alerted to when there is a problem vs when there is not a problem. You don't need this additional stress! I hope you have some peace of mind. I wish I could be more help but the solution is for you + your Dr to develop a true therapeutic relationship. Ask bluntly for more info and support if that what it takes. Hug
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4 ReactionsI'm not happy about the way you are responding to the Moderator , @colleenyoung. This is Mayo Clinic, and their Moderator represents their high+ respected standards. I find your responses to her abrasive, disrespectful and argumentative. Mayo Clinic is providing this forum at no cost. Do you have any gratitude? You sound ' entitled. Well, ' You are not!' We are all here only thru the generosity of Mayo Clinic and the hard work of the Moderator and volunteers. If this does not suit your demands, let me refer you to another forum called "Twitter."
@ffelkey After reading your initial post and what you wrote here:
“I got a call from the nurse practitioner herself asking me how I was feeling and if my knee was swollen/red/etc. which was very strange because they don't usually call me. I said no but that I've been feeling unwell and having neck stiffness & pain. She said "well we think the synovial fluid from your knee was contaminated"
Perhaps what the nurse was saying is they think the fluid may have been contaminated at the time it was drawn. For example, the needle may have come into contact with someone’s skin prior to insertion, either by not sanitizing your skin thoroughly or by accidentally touching it and that may have caused the staph growth in the culture. Could you reach out to your nurse and ask why she stated they thought it had been contaminated? It seems like she was checking on you because they thought contamination may have happened when it was drawn and could have caused infection of prior non-infected fluid in your knee.
I hope you are feeling better!
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