Living with EDS, Mast Cell Activation Syndrome (MCAS), Personal
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Living with MCAS – “It’s nice to meet you too.” 

Saw a new MCAS doc today. Other than my main docs, I do not have a local doc who understands MCAS and issues associated with sensitivities to meds, etc. I’m not one to doctor shop and don’t have time to anyway, so I’ve just dealt on my own – barely. However, things have gotten worse, especially associated with hormones. Two times a month, my body decides it really wants to party hard (more than usual) by attacking itself and anything I eat or take. Fun times.

My husband came with me and after we discussed the main gist of why I was there with my new doc, I asked her about allergy testing. I wanted to ask her for two reasons:

1. I’ve never had it and am somewhat curious.

2. Her response would give a good indication of her knowledge and understanding of MCAS overall – particularly for my case. Of course, I could be “allergic” to something more traditional and that would make things a lot easier – right?

My new doc’s response was key – said nothing at first to my question about allergy testing. Then, looked at me and then the three of us started laughing. My new doc responded by saying, “Yeah, I don’t think there’s a need to do that anytime soon, if at all.” Brian and I both nodded and just kept laughing.

I stated that finding a way to get the hot spots on my thighs and elsewhere to stop, and the cold breeze blowing on my face and other parts of my body to go away. Getting the millions of needle pricks to stop poking me, would be an added bonus. Oh and I feel like I have ants in my ears and the whooshing that is constantly in my head becomes mind-numbing. I even feel reactions in my teeth and they make my teeth move. It’s crazy. And forget other types of reactions and symptoms associated with them. The whole thing is maddening.

I would also like the swelling to go down and to not look like I have a ton of extra skin hanging on my knees. The automatic symptoms improving would also be a plus.

So, my appointment went well, but my records have to be sent from my other docs, etc. I was honest and told her that I’m not a huge fan of meds, have not had the best luck with them, and am not the most compliant patient, but that I wanted to not feel like my body was attacking itself all of the time – especially twice a month.

I told her that I’ve had the best luck with lifestyle factors – diet, exercise, meditation, and certain supplements and that a hysterectomy probably where I’m eventually headed. My hope is that I can find a way to avoid surgery, especially because I’m not naive about the risks. I do know many women like me who have felt better afterward, though.

I then mentioned that quercetin has helped a lot and my new doctor wasn’t familiar with quercetin all, which is fairly telling as well. I did promise I would give the med regimen 4 weeks to see how it helped – especially through ovulation and menstruation. If I’m better two times a month when I usually and much worse, that gives me some insight into how a hysterectomy may help also.

The good news is that even though I’m not sleeping well, my heart rate is stabilizing at night, thanks to stopping the medication that was causing some of my reactions and symptoms. I can also get up so much easier in the morning now. So.much.easier! However, my HR and BP are super low. The doc also did the scratch test on arm yesterday and there was no dermagraphism (red marks), and stated that it wasbecausee I had taken antihistamines the day before. I didn’t believe it.

My husband and I went to dinner before heading home, and I ended up with a terrible delayed reaction to what I ate, which lasted all night and is still happening as I type this now. I did the scratch test on myself, and it’s clear. The picture with lighter marks was taken 3 mins later.


My other hope is that with proper treatment and finding stability, through whatever recipe of modalities works best, that I will not drop things anymore. In the mornings, I’m often so disoriented that I say to my husband “you have to give me time to wake up.” I am super stiff, have pain, especially pain and swelling in my hands, can’t concentrate and get really distracted – more than usual. It’s almost as if my brain and muscles havent started working to give my body the proprioception that I’ve gained and am used to having. The result – dropping things and not really understanding why or how.


Last, I’m thankful for Sandra Maiden lounge wear and clothing (available on Etsy – https://www.etsy.com/shop/sandmaidensleepwear http://etsy.me/1ajzftP) for clothing that I can wear when my skin is so sensitive and hurts from all of this. It does not make me hot and it breaths. It also keeps me warm when I’m cold to the bone. And I’m thankful for Healing Histamine by Yasmina Ykelenstam, who has been trying to help me find a way to see improvement in a way that best works for me and isn’t dependant solely on medications.

#RealLive #LivingWithEDS #MCAS #NeverBetAgainstOccam

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