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Reactive Arthritis?
In 2011 I was diagnosed with a UTI caused by E coli. A course of ABX and I was better for about two months. Over the next six months I had all the symptoms of a UTI 3 more times, but despite labs with Culture and Sensitivity, I was found not to have a UTI. About this same time my feet, ankles and knees hurt so badly when I would first get up, it would take about 50 feet to move somewhat comfortably. I requested to go to a kidney doctor as now I was also having edema in bilateral arms, wrists and ankles. I was also starting to have low grade fevers (99.8-100.7) several times a day with fever blisters. Nephrologist ran many tests and found me to be critically low on Vit D (I trained horses in the Arizona sun 5 days a week with no sunscreen) and that also I had an estradiol level of less than 0.1. WBCs were 4200, and platelets were unable to be counted.
I began taking oral Vit D. But all of the other symptoms continually got worse. The pain in my joints worked it’s way to include my hips and lower back, wrists and hands.
I have 6-8 UTIs a year, but am always negative for any bacteria on testing. With the “UTI’s” I also started having so much joint pain throughout my body that I could only sleep 3-4 hours a night. This pain would improve within a half hour of activity but during the times when I felt like I had a UTI, if I sat for two minutes or longer, the pain would be as bad in my ankles, knees, hips, wrists and hands, as if I had just gotten up. My slight fevers 6-8 times a day became drenching sweats day and night that would come every 5-10 minutes, 24 hours a day. Ibuprofen did nothing but Tylenol helped about ten percent with the drenching sweats. Then I started getting bruises all over my body. My pressures ran 90’s over 50’s and my heartrate has increased from 60-70’s to 105-120’s. I found last year that a round of Levaquan and 40mg of prednisone daily literally changed my life. ALL of my pain went away, and the “UTI” did too. I have had five rounds of Cipro and prednisone this year. Each time I did NOT have bacteria in my urine despite having the symptoms. Each time the excruciating and debilitating pain now in my entire body, has gone away. The bruises disappeared and my heart rate drops to 80’s-90’s. My pressures go to 110-120’s over 70-80’s. My wbc’s also, for the fist time in four years, were the mid 6000’s instead of 3800-4000. My platelets actually went up to 165,000 instead of 135,000. In fact all of my neutrophils increased instead of being very depleted. And best yet, those drenching sweats day and night every 5-10 minutes, we’re gone!
But it all came back 3 weeks post last ABX dose. I have been to two Rheumatologists this fall. The first one got an MRI of my SI joints and found that there was no sacroilitis but rather severe osteoarthritis with severe degeneration in both joints. He also found I was HLA b27 positive. I am negative for the rheumatoid factor, as well as Lyme, HIV, Chlamydia, the list goes on and on. I have had CTs of my entire torso. Nothing found in KUB, heart, lungs. Both my father and my uncle had Ankylosing Spondylitis. This doc said I had neither AS or Reactive Arthritis. I went to another. Even though I told him that I have NO pain in my muscles, only my joints, and that I keep having symptoms of UTI, drenching sweats, exhaustion, and the near inability to move (my hip and knee were hurting so badly I could barely hobble at my appointment) AND that antibiotics definitely REALLY helped improve these symptoms, he told me I had Fibromyalgia. And he also thought I had an irritable bladder? On this day my wrists were swollen, but he told me I had no signs of inflammation in any of my joints.
I am 5’7” and 160 pounds. Despite this horrible pain that has now gone on for years, and the exhaustion that goes with not sleeping or being able to rest, I force myself to be active with my 13 horses and ranch. My inflammatory markers are never high, but this summer when I was covered with bruises, my drenching sweats were as bad as ever, my nails were almost peeling off, over half of my hair fell out in a month and so on, my C-Reactive Protein was 1.8.
This doctor told me that it was due to my BMI. I asked “are you saying that I am so fat, that it has elevated my inflammatory markers?” And he said “Yes”
When all was said and done, and since I wouldn’t accept the diagnosis of Fibromyalgia, as he couldn’t explain why the ABX and prednisone caused such a tremendous improvement in symptoms, (except to say he thought it was a placebo effect) he told me to go to the Mayo Clinic. He said they would be happy to take all of my money and run as many tests as they could, for anything and everything possible, but to be forewarned. To not expect the Mayo doctors to be impressed by labs that used to be 260-290 platelets and now 130-135. And also they would not care that my WBCs used to run in the 6000’s and now are around 3800 when I am sick.
So, please. Any ideas as to what is wrong with me? Whatever this is, it has already stolen a big part of my life over the last 4-5 years, as it has continued to get worse and worse.
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@zara2021 Oh, my goodness, you have had a rough few years. And the worst was the rude reaction of the rheumatologist! How unprofessional. I am so sorry you were treated that way. But, welcome to Mayo Clinic Connect. I certainly hope that some of the members on Connect will be able to help.
Since you live in Arizona, you might want to call the Mayo Clinic in Phoenix and ask for a recommendation of a rheumatologist in your area or go to this website and use the ‘locate a doctor in your area’
http://mayocl.in/1mtmR63
Will you please let me know what you learn?
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4 Reactions@zara2021, @becsbuddy, and all...Wow, what a rough time you're having. I think that rheumatologist is real jerk, and many of us have known doctors who couldn't handle the inability to help a patient, to diagnose and put together your symptoms. I, however, have been going to Mayo Clinic in Florida for several years and don't recognize the description from your past doc; not my experience at all.
I am now seeing a wonderful rheumatologist who diagnosed vasculitis, long overlooked by several doctors. I have other autoimmune diseases and don't want this one, but don't have a choice. He's treating me carefully, no plasma infusions yet, but considering the length of time I've probably had these issues, that's the next step when I have another flare.
I highly recommend Mayo Clinic especially for illnesses like your description. Most of my Mayo doctors think independently, out of the box, and only do the tests that are needed. I've had lots of tests, but not overdone. They lead the doctors in the right direction and them to the base issue; That's generally what was lacking in the medical community.
Keep trying to find the right doctor. Mayo Clinic may have an opening for you, especially after the first of the year, if that's your decision. You've been through too much to not get the help you need. You are your best advocate. Keep it up.
Blessings, elizabeth
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3 Reactions@zara2021 - have you had your thyroid checked? Looking at the pictures of your nails, it seems to me (I’m not a doctor, of course, but just speculating) you may have hyperthyroidism or hypothyroidism … 🤔
I have Sjogren’s and often it is mid-diagnosed as fibromyalgia. Not sure if they tested you for Sjogren’s.
I was diagnosed with a blood test but not all Sjogren’s patients test the same.
ANA (Anti-nuclear antibodies)- Positive in 50-70 % of Sjogren’s. ANA is positive in many other CTDs (5, 6, 9). Some healthy people carry ANA, although often at lower titers (6). Infections, liver disease, and other conditions may also be associated with a positive ANA test.
Check out the website for more information. It was created by an md with Sjogren’s. Another great site is smart patients. See:
https://www.smartpatients.com
https://www.sjogrensadvocate.com
I wish you luck finding a diagnosis. If you do have Sjogren’s, the first line drug of defense against further damage is hydroxychloroquine. It takes a while to work but significantly helps many of the symptoms of Sjogren’s.
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5 ReactionsThat doctor is right, you should go to mayo if you can get in, he definitely needs to be replaced! Either that or find a rheumatologist -there is a list of rheumatologists people with AI have recommend on the Sjogren’s advocate site.
https://www.sjogrensadvocate.com/
This is very consistent with the experiences of many who have tried for years to be diagnosed - usually with some auto-immunity that causes shifting pain and random symptoms that come and go. Doctors can’t always label it or clearly identify bio markers but need to look at the whole picture of what is happening in the person’s body over time. Many don’t want to take the time. Many of us are not believed.
Don’t give up!
https://www.smartpatients.com/conversations
There is a person called Night Bird on smart patients under the topic Sjogren’s who compiled the list of doctors all over the US. You can sign up on the site and then start a conversation or send Night bird a private message. It’s much like connect Mayo Clinic, great source of information from others with health challenges if all kinds.
I am so sorry for your difficulties in finding a decent doctor.
Reading your post again, I noticed your problem with UTI symptoms that are not UTIs. I had the same experience since August took antibiotics then they sent the cultures out and no bacteria. Found out from a gynecologist that I have urethral prolapse (I’m 68), in addition to vaginal atrophy, whose symptoms mimic those of a UT, probably caused by the extreme dryness of mucosa in Sjogren’s patients.
She prescribed topical Premarin (also available generically as estradiol), estrogen cream and within a few weeks I was sleeping again urgency and frequency diminished and pain gone. Worth a look. Also Sjogren’s patients often develop Interstitial cystitis. It is a systemic disease as are other AI diseases so can possibly affects all organs.
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4 ReactionsYes. Thank you for your thoughts. 😊
Funny thing is that my thyroid works great as long as my Vitamin D is good, which relies upon my Magnesium being at good levels. I am unfortunately HLAb35 positive as well, and my PCP suspects I have been chronically low on Mag for years (systemic Mag is not able to be looked at by a simple serum lab test) 😞
This led to my critically low Vit D about 15 years ago. But it wasn’t figured out why until last year.
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2 ReactionsWow! Thank you. I have been tested for it. And you know how doctors work. It doesn’t matter if the test is only 50-60% accurate. If it isn’t positive, then you must not have it. 🙃
I will definitely look into this information. Thank you!
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1 Reaction@zara2021 if you are thinking of going to Mayo, you may want to work with your doctors to do so. They may give suggestions to you doctor, for what can be done locally, first. Also it help for your doctor to do an actual referral rather than you referring yourself. You might also look into the rare diseases website. I believe they can help you find a good doctor in your area
https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist
Please keep me informed!
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2 Reactions@zara2021 - what is HLAb35? I take D3 and Magnesium too, but I still have hypothyroidism and have to take Synthroid to keep it in check. My fingernails are ridged like yours as well.