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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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Please be aware that not all university hospitals are "top-notch". Some have marginal and/or incompetent staff just like a town does. I went to the #1 rated state university hospital. I checked on Friday to ensure that my medical records were there, they were I was told. On Monday, I arrived after a 6 hour drive to be told the records were "not there" and my appointment would not happen. I gave up. Then I made an appt with the second best hospital in the nation, traveled there at GREAT EXPENSE. I also brought my records with me, 8" stack. The "referral was misread" and I was scheduled with a neurologist with a stroke specialty who would not see me because I had NOT had a stroke. The doctor I should have seen was not in that building but was 25 miles away. Another failure of supposed superb medical care. But the EXPENSE was there. Everyone considers going to a university or major medical center. For some, it could be life saving. It could have been for me. I'll never know, I am out of transportation cash to throw away to others' incompetence. Also, considering a trip to these facilities has the reality of transportation costs. Those can equal a month's groceries or rent. Or that trip is simply not going to happen due to costs. Disability does not as well as a previous career.
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3 ReactionsI'm disabled and I'm quite intelligent, also. I had a Stroke 13 years in passing. My speech is all messed up. My memory is lacking from the day before. In fact I can't remember any conversations the day before. But I can write and on my computer I have all the people that I've talked to the day before and I go into these contacts and look at them to remember what the conversation with them. It's quite a deal but it's the only way I can remember what was said. I never get any responses from the disabled agencies.
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2 ReactionsI can’t believe with the tests coming back staph that they are not treating you for an infection. That’s what it sounds like to me. Left untreated staph can be dangerous. Get another doctor if yours won’t listen. Ask them to explain the staph on your tests and why they feel you shouldn’t be treated?
@irishponies Your experiences sound terrible!! Have you considered sending a nice, polite, complaint to the hospital or practice administrator? It could be very helpful, both to you and the hospital. Is that something you would think of trying?
Did you medical issues ever get resolved?
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3 ReactionsWe're here for you, as for forgetting, truthfully I think we all do as we age, I sometimes ponder and say did I take my pill, did I feed the dog, there are meds. For Memory loss but IDK, discuss it with your Dr.
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2 ReactionsDidn't these incompetent facilities send you reminder emails and texts? They hound me to death days before I come. I am so sorry you had to deal with this. Nothing is fair or honorable anymore
Yes, they did all of that. I also called them BEFORE 3 days before the appt. The second #2 hospital in the US insisted they had scheduled me with the correct doctor, "he's the only specialist we have for that disease". I asked specifically if they had the correct doctor because I have an extremely rare disease. They gave me an appt with a stroke neurologist. They repeatedly said he was a different type of specialist and never once mentioned he specialized in stroke treatment. I have not had a stroke. I do not need a stroke doctor. Stroke was NOT on the referral papers. Stroke was not discussed during the 45 minute screening phone call 3 months prior. The stroke neurologist entered the room with the referral papers and said, "I will not see you. You need to see a XXXXXX." I thought he was an XXXXXXX.I drove their because they told me he was an XXXXXX. oh, well.
Naw, they were just incompetent. It cost me over a lot of money. For NOTHING. This was not unfair or dishonorable, that would be kind to label them that: This was incompetence.
I hope you spoke with the hospital administrator or patient advocate. They must know what is going on so it doesn't happen to others. This is awful. I am sorry you had to endure this. I hope you have since gotten care.