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So as it turns out...maybe...NOT a heart attack?

AGBF

Super_Ideal_Rock
Premium
Joined
Jan 26, 2003
Messages
21,374
Hi @Niffler75 -

Woke up to normal blood glucose, as is usual for me in the morning before I take the daily dose of steroids. Took my prednisone and uuuuup it goes. It will come down as it wears off, somewhere between 16 and 22 hours. BP, I'm assuming, is normal as always. CRP is high.

Seeing cardiologist tomorrow to discuss all of this, and having the ultrasound on the narrowing of one of my carotids to see if it's actually a thing, or just a glitch in the CTA scan. Fingers crossed for a glitch.

Weight has been stable for a couple of weeks now - but that's while eating about 1200 calories a day; if you don't want to gain weight while on prednisone, 1200 calories is the new normal. :(sad Can't tell you how much I want to eat CAKE! Birthday in 3 weeks and 'no cake' seems like a complete misery. Thinking I might sneak a piece anyway....

There are NO decent cake shops around here. Wondering if I can get a cupcake shipped to me from Georgetown Cupcakes in downtown Boston....
@mrs-b you definitely need cake. Are you at home now? I can find you a decent one on the Internet. Outside of the fact you aren't supposed to eat cake at all (it seems) do you have dietary restrictions? Actually when I used to send people on Pricescope cakes, I used to talk to them via e-mail first. Bayek,and missy have my e-mail address. If you have either of theirs, get in touch with one of them and let her know it is OK to send me your e-mail address. Then I can find out what you like and where to send it. :))

Deb
 

mrs-b

Ideal_Rock
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Aug 18, 2013
Messages
7,125
Raised CRP is a bit concerning. Hope they find the reason for that!!
Eat the cake!!

Be well @mrs-b ♥
@Slick1 - CRP is meant to be between 0 and 3 - preferably below 1. Mine is always high because of Crohn's. Normally sits between 15 and 35. While in hospital, it went from 37 to 101, then up to 251, then 279. They have no idea why. Last time it was taken it was back down into the 30's, I believe. I really need to get it back under 3, tho.

And you're dead right - I'm going to eat the cake!!
 

voce

Ideal_Rock
Joined
May 13, 2018
Messages
3,505
Hang in there, mrs-b. There'll be tough times but we are praying for your recovery.
 

Bayek

Ideal_Rock
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6,941

TooPatient

Ideal_Rock
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Sep 1, 2009
Messages
8,985
I hope you have had some good news and are closer to an answer! You need to eat a really good birthday cake. After all you have been dealing with, a slice of delicious cake is definitely in order!
 

Bayek

Ideal_Rock
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Joined
May 11, 2013
Messages
6,941
Hope you are doing well.. we are one MrsB, never forget, I'm very lucky to be a PSer in USA meeting people from all over the world. I hope you are feeling better and please do eat @missy 's cake! look's divine.

american-australian-perfect-together-flag-tshirt-noirty-designs.jpg
 

mrs-b

Ideal_Rock
Premium
Joined
Aug 18, 2013
Messages
7,125
Good morning @missy, @Niffler75, @Bayek, @TooPatient and @voce :wavey:

Multiple appts yesterday. Had an ultrasound of my carotids, as a follow on from the CTA scan. There is definitely one, small, discrete place in my left carotid that has an 80% blockage. Given that it's otherwise so clear, and that the other one is completely clear, they're thinking it may not be plaque but may be some sort of tissue build up. Either way, it's not good and will need to be cleaned out. Soooo....I'll be talking to a vascular surgeon next week about having this cleaned. I also need to get dopplers on my legs due to cramping and varicose veins that have suddenly sprung up over the last year. It really does seem as tho my arteries and my vascular system have suddenly become inflamed. Not good. So anyway - the neck thing is one more surgery. :(sad

Saw my cardio in the afternoon and she sent me for a full set of bloods. My inflammation markers are still high - but back down considerably from what they were while in hospital. Meant to be between 0 and 5. Mine are now 31. They *were* 280 while in hospital and 37 when they discharged me, So...some small progress.

But my cholesterol has SHOT up over the last 3 weeks. I eat a low cholesterol diet. I eat a low everything diet. Am now on new drugs that should help address that, if not get it fully under control, and we'll keep plugging away at it till it *is* fully under control. My triglycerides are very healthy - in other words, it's not what I'm eating. For some reason, my liver has gone into overdrive, producing cholesterol and causing plaque. This is somehow attached to my inflammation levels, tho they haven't figured out exactly why as yet.

I also need a small intestine biopsy, since I had some weird findings from my capsule study.

So - in summary - my arteries are narrowing because of inflammation-caused plaque. My carotid is closing over, which leaves me at risk of blindness and stroke (there is already some microscopic blood in my left eye, indicating ischemia). I might have cancer in my small intestine (let's hope not).

So just a regular day in the Mrs B household....
 

Bayek

Ideal_Rock
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May 11, 2013
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6,941
@mrs-b thanks! interesting about how your cartoid has 'buildup' good to get it all cleaned out. I will not joke and make light of what goes on, it is a serious procedure and I KNOW you are a brilliant woman and you will of course do all they tell you to do.

Are you sure you didn't have Covid-19? because vascular problems are caused by the virus..... small bowel cancer is very unusual, I for one am thinking it has to do with vascular situation.. getting answers requires decisions which to my mind only MrsB is forward.

sending a Kate hug and love - always.
 

TooPatient

Ideal_Rock
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Sep 1, 2009
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8,985
You're going to have pictures of every bit of your inner body! Sounds like they are checking everything. I hope they can get the inflammation under control and all the rest just follows.
 

Matata

Ideal_Rock
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Sep 10, 2003
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7,004
@mrs-b your circumstances sound like an episode of Grey's Anatomy. I hope there is a real-life Meredith Gray who swoops in and finds the answer that resolves your symptoms.

You are in my thoughts every day. Hugs and hope.
 

swaye2010

Brilliant_Rock
Joined
Nov 16, 2015
Messages
1,016
I didn’t read through all the pages but have the ruled out infection? I dealt with elevated CRP and had osteomyelitis after a surgery. It is very painful and often misdiagnosed.
 

Niffler75

Brilliant_Rock
Joined
Jan 3, 2020
Messages
949
@mrs-b I feel extremely frustrated on your behalf. It's like the docs are doing their best, finding and making a list of all the presenting issues but not yet getting to the root cause of what is actually going on.
When I was awaiting diagnosis, one of the world leading experts in Ehlers Danlos quotes 'if you can't connect the issues, think connective tissues.' That eventually led me down the right diagnostic path. ::)
 

mrs-b

Ideal_Rock
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Aug 18, 2013
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@mrs-b I feel extremely frustrated on your behalf. It's like the docs are doing their best, finding and making a list of all the presenting issues but not yet getting to the root cause of what is actually going on.
When I was awaiting diagnosis, one of the world leading experts in Ehlers Danlos quotes 'if you can't connect the issues, think connective tissues.' That eventually led me down the right diagnostic path. ::)
What I've been told is - if you can't get a comprehensive diagnosis, it's almost certainly more than one thing. My undergirding issue is inflammation. Personally, I think that's the thing we need to attack first.
 

MamaBee

Ideal_Rock
Joined
Mar 31, 2018
Messages
7,242
@mrs-b I’m so sorry you are still going through this. I’ve been up
to my eyeballs here so haven’t been checking all the threads. I’m praying whatever you have is found soon so you can get on the road to recovery. Big hugs..
 
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prs

Brilliant_Rock
Premium
Joined
Dec 26, 2017
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1,167
Hang in there @mrs-b Your husband loves you, you looked great in that last photo, and you definitely haven't become allergic to diamonds. So there must be light at the end of the tunnel !!! =)2

The Docs will certainly figure it all out before too long. In the meantime I do admire your fighting spirit, and know that keeping the faith, and never giving up hope is very much more than half the battle.
 

JPie

Ideal_Rock
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Feb 12, 2018
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@mrs-b I’m hoping you find some actual ice cream in that shit sundae. I hope my wry humor doesn’t detract too much from my heartfelt well-wishes.
 

Dandi

Ideal_Rock
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Jan 9, 2006
Messages
5,514
I'm always thinking of you @mrs-b, and wish I could do more than just send well wishes! I'm sorry to hear you need an endarterectomy, and I hope your appointment with the surgeon goes well.
 

Weecam

Brilliant_Rock
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Joined
Mar 1, 2017
Messages
586
Checking in often and thinking about you @mrs-b.
Sending you well wishes across the miles.
 

mrs-b

Ideal_Rock
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Aug 18, 2013
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@mrs-b I’m hoping you find some actual ice cream in that shit sundae. I hope my wry humor doesn’t detract too much from my heartfelt well-wishes.
Not one bit. I have a wonderful ice creamery in my little town, and I've decided I'm letting loose and having a mango and rum and raisin cone (my favorite combo) AND a cupcake on my birthday. I normally never eat refined sugar these days, so this is a bigger deal than it sounds and I am REALLY looking forward to it! The ice creams are huge, and the cupcakes are...heaven. :))
 

missy

Super_Ideal_Rock
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Joined
Jun 8, 2008
Messages
34,952
Not one bit. I have a wonderful ice creamery in my little town, and I've decided I'm letting loose and having a mango and rum and raisin cone (my favorite combo) AND a cupcake on my birthday. I normally never eat refined sugar these days, so this is a bigger deal than it sounds and I am REALLY looking forward to it! The ice creams are huge, and the cupcakes are...heaven. :))
That sounds delish! I hope you enjoy it to the max and happy birthday!!!!

(((Hugs))).
 

LLJsmom

Ideal_Rock
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Joined
Oct 24, 2012
Messages
9,419
@mrs-b I am sorry that you are going through so much. You’re a strong lady. My thoughts are with you. Hope the doctors can come up with a comprehensive plan for treatment.
 

mrs-b

Ideal_Rock
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Joined
Aug 18, 2013
Messages
7,125
Spoke to the vascular surgeon this morning. Carotid endarterectomy (cleaning out an artery) next week.

And this is the issue; I have one, out of the blue, spot where plaque has grown and almost closed over the entire artery. I have no other plaque build up in either carotid artery, or in any artery from my chest up. Just this one, bizarre spot. But that's what seems to be happening these days - nothing - no sign - and then...wham!...80, 90, 99% blockage. So now we're basically scanning my whole body, looking for random, rogue blockages. Next up - my legs.

Ah, the circus which is auto immune!
 

mrs-b

Ideal_Rock
Premium
Joined
Aug 18, 2013
Messages
7,125
Aaaaaaand just got a call from my cardiologist's office. They're referring me to a neurologist. They want to check out my brain for plaque build up.

So now we've got my neck, my brain, my right leg, my left arm, my gut - from start to finish, my left eye and my entire vascular system.

And I STILL don't qualify for a handicapped parking permit! What the heck is THAT all about??
 

Alex T

Ideal_Rock
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Joined
Oct 24, 2012
Messages
5,133
Aaaaaaand just got a call from my cardiologist's office. They're referring me to a neurologist. They want to check out my brain for plaque build up.

So now we've got my neck, my brain, my right leg, my left arm, my gut - from start to finish, my left eye and my entire vascular system.

And I STILL don't qualify for a handicapped parking permit! What the heck is THAT all about??
Big hugs to you. It does sound like they might have had a teeny lightbulb moment with the plaque deposits, even though they don't know the cause. Fingers crossed you can get some answers soon x
 

AGBF

Super_Ideal_Rock
Premium
Joined
Jan 26, 2003
Messages
21,374
@mrs-b, you are a mystery package. I hope some brilliant young fellow at one of those Harvard affiliated hospitals in some specialty takes a liking to your unique case and finds a medical breakthrough that cures you and also helps all of humanity. And I hope they name this malady (or maybe the treatment) after you. Then I hope you are free to eat cupcakes and ice cream daily without ill effects to your body.
 

voce

Ideal_Rock
Joined
May 13, 2018
Messages
3,505
Big hugs to you @mrs-b

Be brave, I know you are a tough bird and will survive these trials and tribulations with your DF by your side. The plaque buildup explains a lot, and in my opinion had to be related to the steroids routinely prescribed for auto immune conditions.

To this day my dad still has a rash that never goes away; taking steroids for skin allergies previously started to do weird things to his nerves, so now he uses astringents and Benadryl daily, having sworn off the steroids. I don't have what you or my dad is going through, but my skin develops rashes more easily, and I may yet have inherited my dad's immune system. He was not allergic to anything when he was young, but now he has so many food allergies, it never makes sense to take him out to eat. It's always homemade foods, even before the coronavirus, for him.

Anyway, hoping you have good luck during the diagnosis, and they catch everything they inspect. It is a lot you agree going through, but hopefully the doctors can come up with a best plan for treatment. Keeping my fingers crossed for you and sending some more dust your way.
 
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