Hmm that's weird

Check out my other blogs for the start of my story.

On my medical team I now have a cardiologist, pcp, pulumnologist, allergist, neurologist, nutritionist, sleep dr, and medical team lead.

We start to get the results in. They don't find any lung dysfunction or consistent drop in pulse ox. My heart is good but it runs high. I never get below 90 bpm. They found my crp is high, High a1c 9.0, complex/mixed apnea, fatty liver, hyatial hernia, lazy breathing, midline facial pain, reflux, epilepsy (absence seizures), allergys, chronic sinititis, and chronic pain.

Other then all that I am supposedly healthy. So I decide that I am going to do everything my Drs have suggested. I am eating a diet of chicken and veggies with no sugar intake. I take all the other medicine that I am prescribed. My cardiologist says if I lose a few pounds I will feel better. So I do it.

I come back after losing 10% of my body weight. Now I feel a lot worse. I am always in pain and always tired. I go back to my cardiologist and tell him I feel worse. He says. Hmm no one ever does that and feel worse.

This is the danger of going to the best hospital. If they can't find the answer it becomes my fault. They see me without a diagnosis and don't have answers. All my Drs say hmm this is all weird for someone to go from healthy to having these issues. It doesn't make sense, but we don't know why you are in pain and tired all the time.

They sends me to another hospital to find a dr who can help. I see an endocrinonlogist and they run some tests. They find my cortisol is low and my thyroid is a little low. I get some synthroid and go immediately to hyper thyroid. Unfortunately the dr is on vacation. The office says keep taking it, I am getting paranoid and puking constantly. Luckily my wife takes it away from me. I go back to tired now.

The dr says I have empty scilia even though I can clearly see it. So we see another endocrinologist and she says their isnt anything wrong with me and I should stop seeing Drs. I got a third opinion and this dr says their is something wrong but she doesn't know what.

By now I am barley working 40 hours a week. My pain is 24/7 and overwhelming. I am so tired I can barley work. I start taking days off. 1 a month, then 2. I decide to take a month off to rest and go back to work. My pcp says she I opposed to me working.

My pain meds aren't working anymore, so I get referred to a rheumatologist. She thinks its rheumatoid arthritis, but my labs don't show it. She wants to start me on a biological. Luckily she will save my life without even releasing it. She refers me to a pain dr.

This is a huge step. I have cried 4-5 times in my entire adult life. I remember sitting on my living room floor crying with no hope of pain relief or relief from my exhaustion.

The pain dr changes my meds around and uses a mix of muscle relaxers and mild opioids. I am sleep a lot but want to desperately go back to work.

Comments

"This is the danger of going to the best hospital. If they can't find the answer it becomes my fault." Same old story, no matter what sort of hospital. :-(
 
I think it's worse here. My ent who is one of the best in the world also works at another hospital. I asked him away from not Jewish. He said, "if you had cancer or copd, they would attack it with insane veracity. When they don't know and they are the best they blame the pt more. When other Drs look up to you, you have to make shit up"
 
Well, Reactive Arthritis is a tricky one. Surely there had to be some arthritis like features for your doctor to suggest Rheumatoid Arthritis?
 
I've seen 3 rhuemotologists. I always have a high crp and white cell counts. I have fevers constantly. Less since I've started ivig treatments. No other arthritis markers. Severe all over pain.
 
There are only markers for Rheumotoid Arthritis - Reactive Arthritis is diagnosed based on symptoms and sometimes by also identifying the causative pathogen. I think it is possible that I have something like a mild form of ReA, without the inflammartory changes in joint, caused by Yersinia Enterocolitica. Since Streptococcus can also trigger ReA, it seems possible to me that you may have something similar. Do you have any pain in or near your entheses? These are near your joints and tendons.
 

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