Looking for help with some new symptoms

[voner]

Rachel,

Another item to check is your blood pressure measuring device. I’m not sure if it’s still true, but a few years ago it used to be true that the wrist devices were much less accurate than the ones that attached to your upper arm.

 

[Rachel Riggs]

Rachel,

Another item to check is your blood pressure measuring device. I’m not sure if it’s still true, but a few years ago it used to be true that the wrist devices were much less accurate than the ones that attached to your upper arm.

Good to know!! I am currently using a traditional arm cuff.

 

[Rachel Riggs]

I just got this interesting reply from my email to Dr. Kaufman:

I think this is mostly from MCAS. Remember that among the 200 cytokines release by mast cells there are many that are vasoactive and can cause edema, blood pressure changes, leaky membranes, etc.

 

[rel8ted]

perhaps something similar to Reynauds

I have heard this more than once. I get pretty much those same symptoms when I am doing worse - it's a blue line around my outer lip, puffy face, very dark circles. I really understand why they would think it Raynaud's, and if you get an answer, I'm interested to know what it is.

 

[Ema]

It sounds a lot like circumoral cyanosis, which can be caused by GERD, among other things. You might try some baking soda, if there is an underling acidosis.

 

[Gingergrrl]

I just got this interesting reply from my email to Dr. Kaufman:

I think this is mostly from MCAS. Remember that among the 200 cytokines release by mast cells there are many that are vasoactive and can cause edema, blood pressure changes, leaky membranes, etc.

I'm laughing to myself with how much we all must bother him with e-mails ...

His answer is very interesting and when I was having anaphylaxis to all food in 2015, my BP was extremely low (80/50 or lower). But when I became unable to eat food for days at a time due to anaphylaxis, my BP became much more normal around 100/70 and Dr. K also felt it was due to not being under attack from MCAS cytokines, etc.

I wish I could retain and explain the connection between POTS/Dysautonomia and MCAS but all of the experts clearly state it. Also, when I used to post on MCAS boards, almost every single person also had POTS. IVIG put my MCAS into remission in 2016 and it has never returned although I cannot explain why. I hope this is also the case for you.

 

[Rachel Riggs]

I'm laughing to myself with how much we all must bother him with e-mails ...

His answer is very interesting and when I was having anaphylaxis to all food in 2015, my BP was extremely low (80/50 or lower). But when I became unable to eat food for days at a time due to anaphylaxis, my BP became much more normal around 100/70 and Dr. K also felt it was due to not being under attack from MCAS cytokines, etc.

I wish I could retain and explain the connection between POTS/Dysautonomia and MCAS but all of the experts clearly state it. Also, when I used to post on MCAS boards, almost every single person also had POTS. IVIG put my MCAS into remission in 2016 and it has never returned although I cannot explain why. I hope this is also the case for you.

Wow, remission!!! That's hopeful, I am eager to try it.

Yeah, I try to be really judicious about bothering Dr. Kaufman and keep my emails as succinct as I can. I am very aware of how much pressure he is under with so many sick, desperate patients. He really is not only a great doc but a fantastic person.

 

[Gingergrrl]

Wow, remission!!! That's hopeful, I am eager to try it. Yeah, I try to be really judicious about bothering Dr. Kaufman and keep my emails as succinct as I can. I am very aware of how much pressure he is under with so many sick, desperate patients. He really is not only a great doc but a fantastic person.

Agreed w/everything you said and hope you are feeling better today, Rachel.