what is going on… MCAS?? anaphylaxis??
Posted: 07 August 2013 09:34 PM   [ Ignore ]  
Total Posts:  57
Joined  2013-04-25

It’s time for me to REALLY push my GP for a consult with an immunologist!

A few days ago my tongue became tingly and it felt ‘thick’ inside my mouth. I thought it was weird but it didn’t alarm me. I’m not even sure if I was eating or not.
Then today it happened again but to a much more significant degree. We were at a restaurant that we frequent and immediately after eating I told my husband I felt weird and that my tongue/throat felt thick and swollen. Then a pins and needles feeling started and the swelling got worse. I told my husband I wanted to go straight home and as I said that, we noticed I couldn’t enunciate my words properly and my speech sounded garbly. My tongue was getting in the way! While driving, the tingling was on the skin of my chin. It was pretty scary but by then we were in the driveway and I immediately took a benadryl. Within a short while the swelling subsided. The swelling never got so bad that I felt my throat was closing but it was bad enough that it was interfering with my swallowing (salivation increased). I didn’t have any hives or skin reactions at all and thank God there weren’t any breathing issues involved. I didn’t eat any new foods so not sure what caused this but sure don’t want it to happen again!
Three weeks ago I had a strange(for me) skin reaction to a simple SCRATCH on my arm and a BUG BITE on my leg, both the same day. I didn’t even become aware of them until the areas became intensely itchy hours later and I noticed 2 superficial scratches on my right arm and a small bite of some type on my left calf. I figured they both must have occurred when I was in the garden earlier. Itching the scratch had caused it to become crimson and the arm had become noticeably swollen. The leg bite was insanely itchy too but in that case, a perfectly round circle had appeared 1” BESIDE the bite and it also was swollen. Other than the intense itchiness, I didn’t feel odd in any way so I didn’t think it necessary to go to ER. I took a benadryl and it helped a bit with the itch but not the appearance of the sites. The leg swelling lasted about 10 days and the arm a bit less. The wound (by the 2nd day it resembled more of a nasty burn then a simple scratch) continued to be an ugly large sore until just yesterday.
No, I didn’t go to my doctor about either of these incidences. I should have but I hate going there with all my obscure, weird symptoms.  Now I wish i would have so that she might be able to put some of these recent puzzle pieces together.

Many of you don’t bat an eye to things such as these because you go through them yourselves! That makes me feel validated more on this site than at my doctors office. I’m glad for sites such as

My question is, Do you think those 2 incidents relate to each other and do you think it means my ‘condition’ is escalating? I think it looks like allergies gone wild but b/c I also suspect I have EDS-3 and already been dx with POTS, I’m wondering if its more likely MCAS?
Any opinions?

Posted: 07 August 2013 10:37 PM   [ Ignore ]   [ # 1 ]  
Sr. Member
Total Posts:  215
Joined  2013-05-17

I don’t know the answer to your questions, but as a kid I had the same thing happen with my tongue and mouth.  Since I was a kid I never told anyone, but I remember it happening at weird times.  It would even happen in the middle of the night.  The sensation was so weird and uncomfortable that I still remember how it felt.  It would rarely happen when I ate, but the only food I am allergic to is swiss cheese.  I also, have bad reactions to bug bites.  Mosquitoes love me and I get huge itchy welts from them, and my children do too.  Now that I know I have EDS I know it is all related.  Maybe Dr. D can answer you.  I want to know the reason too.  Is it common for those with EDS to be Mosquito magnets?


Lab-Scientist-Lady smile

Posted: 08 August 2013 09:20 AM   [ Ignore ]   [ # 2 ]  
Total Posts:  57
Joined  2013-04-25

Hi there LabsciLady! I have never had these things happen to me before other than just recently. The tongue swelling to the point of interfering with speech was scary and I don’t want it to happen again! I read its very rare, but since I’ve upped my midodrine dose lately, I’m thinking its possible I reacted to that. Pretty unlikely though b/c I’ve been increasing it slowly over the past month. Started at 2.5 mg 2x day (which did not increase bp at all) and presently I’m at 5.0 2x/day so that’s pretty low still. I’m grasping at straws until I get an app’t with my doctor hoping she’ll refer me to an immunologist.
As for the bug bite, it wasn’t a mosquito. The very small bite never swelled at all even though I would itch it constantly. The redness and swelling occurred beside the bite and was about 20x larger than the bite itself!
Hard to say what’s going on.

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