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Major update conclusion

#Doctors #Diagnosis #CTScan #MRI

(Part 2) So, where does this leave us with all findings? That's the thing. . .I got a strange call from a sympathetic receptionist a few days after the neuro appointment who seemingly understood my situation. She told me that he had reviewed my neurology report & was very interested in my case. She understood the medical gaslighting that was going on & she asked me, did your previous geneticist do a connective tissue panel? I gave the long answer of no. She told me he would like to see you when all these appointments are over because he has some ideas as to what we are dealing with here. Who was this person? The neurologist personal geneticist. All that's left besides pt is neuro follow up & I'm going to see this geneticist who is interested in my case. But you wanna know what makes him standout to me? His clinic was established as recently as 2021! 0_0

The original genetic testing didn't cover disorders of collagen function & I think I know what "some of his ideas" are. . .

All I'll say is watch this space. Summer is about to HEAT UP! Peace out everyone.



It sucks to be gaslit by anyone, but it’s even worse when it’s by the doctors.

A few years ago I had an ear infection and on the screen in the doctors was the phrase “cholesteatoma”. I had had a CT scan about 2 years before and this was never mentioned to me.

Afterwards, I requested them to find the letter from the CT scan results and they said they couldn’t find it. And I was mocked for asking about it.

It was then repeated verbally when the surgeon was going through risks of my jaw surgery. Processing all the other information given, I never asked what it was.

It’s something that’s always bothered me, so a few weeks ago when I switched doctors surgery, I requested access to my medical records. This was granted.

Last night I spent time trying to find the letter. And I found it. I sat there in anger, shock and disbelief for a good while. And the way they worded their disappointment when I declined the operation to fix what I knew as just a tiny perforation in my ear when they advised against having an operation.

I wonder if my hearing loss could have been avoided if they had told me. Because I wouldn’t have turned it down, had I known. I was always on the fence about it, but I trusted them when they said there wasn’t much point.

On my current referral to ENT, it’s never been mentioned. I plan on bringing it up when I see them. I just don’t understand why they hid it from me.

#Cholesteatoma #ent #ear #Gaslighting #HearingLoss #CTScan

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What are peoples experience with CT scans and barium?

I’ve never had one before and am a bit nervous. I’ve had quite a few procedures I don’t know why this one in particular is making me anxious. #IBS #CTScan

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Let's talk #MedicalTrauma

I went to the hospital Tuesday for another #CTScan for my #Undiagnosed GI issue. I was told there would be contrast. I was never told what my whole ordeal would consist of. For someone that can barely eat or drink, I had to drink 32oz of contrast and a cup of water. This contrast tasted like the prep you have drink before a #Colonoscopy so it made it even harder. I had 10 minutes to drink each cup. so three cups of liquid in 30 minutes. If I couldn't, they couldn't do the #CTScan. I am #angry that my doctor didn't provide me with the information I needed to prepare myself for this test. I am #Upset because I was blindsided. I am #hurt because I had to do something I wasn't prepared for because my doctor didn't feel I needed to know what this test entailed. I'm #scared to let this doctor order more tests.

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