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Need Patients' Experience with Mayo Clinic. Is it worth it?

Visiting Mayo Clinic | Last Active: Jun 6 4:29pm | Replies (148)
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@jlharsh

Hi @eer. I notice on your profile you are pretty new on Connect. Welcome! Hopefully @nycdave7 will pop back in this conversation and provide an update as to how he is doing.

You mention a problem with a Kenalog injection in another conversation. Is this the same drug you are referring to that is difficult coming off of now?

I had a systemic reaction years ago to an injection in my shoulder and put two drugs on my allergy list because we didn’t know which ingredient caused it. That ended up being an unforeseen problem for a surgery, so I ended up pursuing an allergy challenge. I had an initial appointment near me and it just didn’t feel right when the doctor told me what I was describing sounded questionable. I felt like he as blowing me off. I opted to go to Mayo Clinic and challenged both drugs. One remains on my allergy list after having a not-so-typical reaction during the test. I am so, so glad this is documented because now it is something concrete that fits as a puzzle piece of my health.

How long have you been dealing with these symptoms?

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Replies to "Hi @eer. I notice on your profile you are pretty new on Connect. Welcome! Hopefully @nycdave7..."
David | @nycdave7 | Jun 3 8:52pm

Hi Janell, Think we may have crossed path on reddit before, your story sounds familiar. Anyways with me, I am roughly the same maybe worse. Since I last posted, I noticed a couple of things:

- Resting diastolic blood pressure has slowly crept from 88 to 95 - 98. Unfortunately, doctors are still dismissing me and won't put me on blood pressure meds because I am healthy and they dont think I have hypertension despite symptoms of palpitations and light headedness.

-I dont know if this is related, but more prone to infections like cold, COVID, and poor dental health (despite regular check ups, brushing my teeth daily, and flossing). Been getting many root canals

- Worst of it all, I was diagnosed with osteopenia, borderline osteoporosis. I am a male, 31 years old, 145 lbs, slim athletic fit, exercise daily via calisthentics, biking, and going to gym for strength training. Had to get a bone scan cause of hip pain

- Been getting 3 - 4 24 urine cortisol free tests in which they come back above elevated (usually a score of 65 - 70 in which upper limit is 50). My serum cortisol and midnight salivary comes back normal. I wont do a dexamethasone suppression test as this all started with prescribed steroid eye drops.

Overall I am losing hope and desperate to find a cure or effective treatment for this. I have seen on reddit where patients would get prescribed isturisa from JUST suppressing from a one time dex test. I am at a point in which I would like to try a small dosage of anti steroid medication to see how my symptoms get effective.

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