CT-Scan of Chest, Updates

[Missus835]

After ER doc did more indepth bloodwork night before last, my CRP had gone up from April 28 (it was at 3) to a whopping 42. He also did a test that can show negative for possible blood clots in chests (or elsewhere I guess). If negative good, but mine was "positive", which can mean a possibility because my RHR is all over the place. So we opted to do the CT next morning (May 9). Took 10 mins. for the scan and didn't get results back until 3 in the afternoon. Anyway, no clots, no aneurysms, no nothing. My lungs are normal. Chest x-ray also clear. I was very scared and this is about the only good news I've received in months of stuff being piled it on.

On antibiotics no for productive chest cold and flare symptoms. We upped the Pred to 40 mg as pain in neck, head and jaw returned (I do not have GCA). I'm only staying at 40 until the ER doc talks with rheumy and I hope she has more luck than I.

Low back is still excrutiating, stomach pain is subsiding and I assume that is with antibiotics. ER doc did prescribe some Flexeril, which did give me the greatest night sleep with many nights having not slept. He feels it's muscle impingement, but top of left thigh is going numb (pins and needles) and then feels hot/cold. Time will tell.

Two out of three ain't bad. I was crying about the blood clot thing, but made a positive intention to accept "what comes, comes" because with PMR every day is something new. Worrying does not help.

[DorsetLady PMRGCAuk volunteer]

No worrying doesn't help, but it's perfectly understandable....

hope the increase in Pred helps you improve...🌸

[Missus835 in reply to DorsetLady]

Thanks DL. My concern was and also the reason for the increase is that maybe I do have GCA and thus return of those particular pains (not PMR pains). Jaws in particular and massive headache. I'm hoping the 40 mg. is enough, because I had managed to get down to 30 mg. since January '23. Continuing to monitor. Still a few random shooting pains in head this morning.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

As you say, let's hope the ER doc gets more from Rheumy then!.. But do let them [ER] know you still have head pains.

[Missus835 in reply to DorsetLady]

Thanks DL for your reply and always great advice. Enjoy your day doll.

[PMRpro Ambassador]

"RHR is all over the place"

Do you mean it is irregular? And you have PMR inflammation ? And you were stressed? All of them can raise d-dimer ...

[Missus835 in reply to PMRpro]

It was 118 with something that starts with "h" I think (not pvc's). From what she said, I just gathered it was irregular. I cannot think of the term for the life of me. I was definitely under stress. This was when the EMT took my heart rate, not the ER doc.

[SheffieldJane]

Great news! I hope your pain gets sorted out soon. In my experience you get these clear tests, feel a moment of relief, then think “well, what is it then”?

All best wishes going forward, you have been very frightened. 🪻

[Missus835]

Indeed. I just called the Rheumatology Nursing Line and they said that "hip impingement" is not Rheumatology related. I was gobsmacked. I tried to explain that I'm merely trying to touch base with my rheumy because of ALL the reports she must have received over the last week after 4 trips to the ER and that I might need further tests related to them and what are my next steps. She said if "I continued to get disrespectful with her, she would end the call." I wasn't disrespectful at all and could have been. She hung up on me. Today has been a day from hell.

[PMRpro Ambassador in reply to Missus835]

She must have been having a bad day! Someone needs to explain to her that respect must be earned - and that isn't the way to go about it

[Missus835 in reply to PMRpro]

So then I tried to explain to her about upping my Prednisone to 40 mg and I really needed to talk with Dr. Shaw about this as pains have returned in head and we're keeping an eye on it (per Dr. Shaw). She said, "but you don't have GCA". How she knows this...I have no idea. So I said I was not diagnosed with it, but the symptoms are there and have returned over the last couple of days, thus the upping of the Pred. That's when she gave the the schpeel about "respect". Then she hung up. I really, this time, would like to make a complaint, but I'm not sure to whom at this point.

[PMRpro Ambassador in reply to Missus835]

Mention it to the doctor - in the context of the head pains, his management and HER diagnosis of it's not ...

[HeronNS in reply to Missus835]

cpsns.ns.ca/complaints-inve...

healthcareexcellence.ca/en/...

Also check with the library because they should have some relevant information or be able to find it for you (certainly they could back in the day). You may need to contact reference dept at Central if AG can't help (most of AG's resources were sent to Halifax when Central opened, but librarians can do a lot with online resources now, no matter the location).

Second link has suggestions about how to find appropriate organization to complain to, not just physicians.

[Missus835 in reply to HeronNS]

Thanks Heron. I did call the actually Rheumatology Clinic (not to complain about the Rheumatology Nursing Station), but a last ditch effort to reach out to rheumy. If that doesn't work I will go through the channel of my diagnosing Neurologist, who has been very good about forwarding my emails to her. Ridiculous isn't it?

[HeronNS in reply to Missus835]

Well, as you know, I have been wishing you good luck all through this very trying adventure. Hope things improve soon. Last thing you need when you feel unwell is to have to struggle to be taken seriously and receive the care you need. ❤️🌷

[Merryfield]

Dear Missus. The baddies came out clear so that’s great. So sorry you are suffering with the other body parts.