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

AGBF

Super_Ideal_Rock
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Jan 26, 2003
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21,317
@mrs-b I totally get it! ::) Bracing myself here for warmer weather and an upswing in my symptoms.
What happens to you, Niffler? I am sorry that you have a harder time at this time of year.
 

Niffler75

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Jan 3, 2020
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@AGBF I have Ehlers Danlos, a connective tissue condition. I also have probs with my mast cells. They live in connective tissue and because mine has not formed properly it releases mast cells at the drop of a hat to have a party, causing issues with BP, pain, fatigue (like an allergic reaction). Heat is a trigger for me unfortunately! o_O

AZveppc.jpg
 

AGBF

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21,317
@AGBF I have Ehlers Danlos, a connective tissue condition. I also have probs with my mast cells. They live in connective tissue and because mine has not formed properly it releases mast cells at the drop of a hat to have a party, causing issues with BP, pain, fatigue (like an allergic reaction). Heat is a trigger for me unfortunately! o_O

AZveppc.jpg
I am sorry to be so dense about your Ehlers Danlos, Sniffler. I remember that that was your diagnosis. When we discussed it before I alluded to my daughter having some of its symptoms.

I am just ignorant about how the syndrome presents itself: whether it is the same in everyone; what the symptoms are; what the heat does to exacerbate them.

It is even possible my daughter has Ehlers-Danlos III. Since you have a definitive diagnosisI I am assuming that a genetic test is now available for it. As I mentioned when we last discussed this, there was no test yet available when my daughter was sent to a geneticist about whether she had it. Since then there has been no need to find out, since we only needed to know in order to factor it into whether hip surgery would work for her.

My daughter's connective tissue is very loose. At The Hospital For Special Surgery the pediatric orthopedists kept measuring the angles to which her limbs (and fingers) could bend. Sometimes one would say he had never seen such hyperextension before.
 

Niffler75

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Jan 3, 2020
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915
@AGBF You are totally not being dense! There is no genetic test for hypermobile EDS. There is for other types. Everyone is affected in differing ways and differing degrees.
Check out the Ehlers Danlos Society website for tons of useful info.
It maybe is worth considering an evaluation for your daughter.
 
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HS4S_2

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May 23, 2017
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522
@AGBF You are totally not being dense! There is no genetic test for hypermobile EDS. There is for other types. Everyone is affected in differing ways and differing degrees.
Check out the Ehlers Danlos Society website for tons of useful info.
It maybe is worth considering an evaluation for your daughter.
My daughter was evaluated for EDS and marfan when she originally had her scoliosis diagnosis. She is 6ft and has long arms, legs and fingers. She is also very flexible. Before doing her fusion surgery they had to rule out other factors. They did genetic testing to look for the marfans but EDS testing was not available. For the marfans she had to do scans of her heart and other things to rule it out. She didn't have all of the "normal" features for marfans and ended up not having other underlying factors for EDS. It ended up that she is just long and lanky with a large growth spurt in a short period of time which progressed the scoliosis. The whole long post just to say....I had never heard of either marfan syndrome or EDS before we started ruling out underlying causes for the scoliosis. Since then we have had a Real Estate agent that works in our office with EDS and she goes through patches of being very ill. It is interesting to see how the heat can increase symptoms. Thank you for sharing!
 

AGBF

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My daughter was evaluated for EDS and marfan when she originally had her scoliosis diagnosis. She is 6ft and has long arms, legs and fingers. She is also very flexible. Before doing her fusion surgery they had to rule out other factors. They did genetic testing to look for the marfans but EDS testing was not available. For the marfans she had to do scans of her heart and other things to rule it out. She didn't have all of the "normal" features for marfans and ended up not having other underlying factors for EDS. It ended up that she is just long and lanky with a large growth spurt in a short period of time which progressed the scoliosis. The whole long post just to say....I had never heard of either marfan syndrome or EDS before we started ruling out underlying causes for the scoliosis. Since then we have had a Real Estate agent that works in our office with EDS and she goes through patches of being very ill. It is interesting to see how the heat can increase symptoms. Thank you for sharing!
I shared in another post that my daughter was also tested for Marfan Syndrome. She did not have it, but the echocardiogram she had for her work up revealed she had mitral valve prolapse.We are quite a little club. :))
 

HS4S_2

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I shared in another post that my daughter was also tested for Marfan Syndrome. She did not have it, but the echocardiogram she had for her work up revealed she had mitral valve prolapse.We are quite a little club. :))
How is your daughter doing now. I am going to see if I can find that post. My daughter did not end up having any heart issues other than very slow heart rate. It ended up that she is very fit because she is an athlete. She does have a large "wing" span but not unusually so given her height. Being 6ft tall at 14 and having it bring more attention was irritating for her. Due to her flexibility (one of the many checks was her thumbs being able to bend up and touch her forearm) it needed to be ruled out. I will have to look at the checklist they used for both conditions. It seemed so stressful at the time because so many things were being thrown at us at once.
She is on the other side and is now (still) tall, athletic and fused from t3-l2.
 

Daisys and Diamonds

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@mrs-b
i took this picture for you last night as i wondered how you were doing, its covered in flowers
20200527_164419.jpg 20200527_165309.jpg
this little guy lives in the WC
he shimmies down to take a look at me most days
 

mrs-b

Ideal_Rock
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Aug 18, 2013
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7,079
@mrs-b
i took this picture for you last night as i wondered how you were doing, its covered in flowers
this little guy lives in the WC
he shimmies down to take a look at me most days
Made me smile, @Daisys and Diamonds - how delightful!

Today was a tough day. I had to have a CTA scan of my head and neck, and it took 2 techs, 3 nurses, and 7 attempts to find a vein. When I got home, I had a telecon with the head of colo-rectal surgery at BIDM in Boston, who told me I was looking at surgery for a stricture somewhere down the track. (...there's a pun in there somewhere...) And then my gastro's office called me, telling me she wants a telecon with me tomorrow to tell me the results of my capsule study.

Suffice to say - my stress limit has been reached for the day.

On the other hand, the weather here was GLORIOUS today, and my husband, Tim, and I went for a walk this evening, which was just delicious. So there's still joy in the world. :))
 

TooPatient

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Made me smile, @Daisys and Diamonds - how delightful!

Today was a tough day. I had to have a CTA scan of my head and neck, and it took 2 techs, 3 nurses, and 7 attempts to find a vein. When I got home, I had a telecon with the head of colo-rectal surgery at BIDM in Boston, who told me I was looking at surgery for a stricture somewhere down the track. (...there's a pun in there somewhere...) And then my gastro's office called me, telling me she wants a telecon with me tomorrow to tell me the results of my capsule study.

Suffice to say - my stress limit has been reached for the day.

On the other hand, the weather here was GLORIOUS today, and my husband, Tim, and I went for a walk this evening, which was just delicious. So there's still joy in the world. :))
I hate it when they call to say talk about results later! Hopefully that means something was found but is an easy fix.
 

missy

Super_Ideal_Rock
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Jun 8, 2008
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34,776
Hugs to you @mrs-b. You are in my daily thoughts and prayers.

And same for @Karl_K I am holding good thoughts and well wishes for you and your family Karl at this difficult and sad time.
 

Bayek

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May 11, 2013
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6,930
Hey Mrs B, went to sleep thinking of you and got up and was thinking of you.. today will be a fine day and maybe you will get some answers. sending the strength all women have to support another woman, we are family.
 

mrs-b

Ideal_Rock
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Aug 18, 2013
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Gastro consult this morning re results of capsule study. Small intestine is full of inflammation and swelling. Will start more aggressive treatment in about 3 weeks.

Neuro ophthalmologist consult also this morning. Results of CTA scans show one discrete spot in the left carotid that *may* be 80% blocked. From a different angle tho - it doesn't appear blocked. So this is unclear and I need an ultrasound. Because, goodness knows, there is still about 5 minutes in my day I'm *not* spending at hospitals, and heaven forbid I should get ANY time to myself....

Gut not so good today and feeling a bit squeamish. Probably because I cut the prednisone yesterday. Blood glucose, on the other hand, is normal.

I feel like somebody's science project.
 

AGBF

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Jan 26, 2003
Messages
21,317
How is your daughter doing now. I am going to see if I can find that post. My daughter did not end up having any heart issues other than very slow heart rate. It ended up that she is very fit because she is an athlete. She does have a large "wing" span but not unusually so given her height. Being 6ft tall at 14 and having it bring more attention was irritating for her. Due to her flexibility (one of the many checks was her thumbs being able to bend up and touch her forearm) it needed to be ruled out. I will have to look at the checklist they used for both conditions. It seemed so stressful at the time because so many things were being thrown at us at once.
She is on the other side and is now (still) tall, athletic and fused from t3-l2.
My daughter's wingspan was greater than her height and her thumb could bend back to her forearm as well. (The mitral valve prolapse resolved itself by the time she was out of her teens. I didn't even know that was possible. She had been followed by a pediatric cardiologist, however, and he discharged her.)

My daughter was the tallest child in her elementary school when they "graduated" in fifth grade. (I had asked her if she was the tallest person in the school and she had replied, :No, the teachers are taller".) She then stopped groaing and is now, as an adult, only five foot five inches tall.

My daughter could also fold her calf back under her thigh and lie down with a leg bent at the knee.It was her in-toeing that embarrassed her. Other children said she walked like a duck. She was made fun of. But what had scared me was an orthopedist's saying she would get arthritis in her knee is she didn't get surgery when she was young. Once I learned that that was not true and that the procedure was purely cosmetic, I was able to rest easy.

I knew se could have a cosmetic procedure at any age and when she was more able to have unput into a decision. In addition, if she had Ehlers-Danlos III the surgery proposed for her hips might not take well due to her collagen.

My daughter is fine now, physically, but she became bi-polar (or her being bi-polar revealed itself) when she was a teenager. That is only partially managed with psychotropic medication and no psychotherapy (all have been tried) has proved helpful.
 

mrs-b

Ideal_Rock
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Aug 18, 2013
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7,079
Thanks @missy, @Slick1, @Niffler75, @Bayek and @Sparkles88 for the warm, supportive thoughts. I'm trying to stay calm with this and attack one issue at a time. I just don't know where to start,

I probably also have a thing called bacterial overload. I can't get tested for this for 3 weeks. I also need a small intestine biopsy. Can't get that for about 3 weeks also, because hospitals simply aren't open for elective surgeries.

This coronavirus is screwing with my life right now.
 

bling_dream19

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Joined
Feb 21, 2019
Messages
1,678
So sorry about you are going this. I pray for you daily your body heals. Glad you enjoyed a glorious walk! I'm enjoying those too. A walk while admiring bling, flowers, with your hubby sounds like a great day to me!
 

mrs-b

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Aug 18, 2013
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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....
 
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