Hi all,
I often have terrible flaring that last for a week after I’m exposed to breathing in even small amounts of second hand cigarette smoke or things like incense or essential oils ie eucalyptus oil. Does anyone else have this problem? I also once a terrible reaction when I burnt a Teflon coated pan from the fumes which lasted for a few weeks.
Good post Ralapure.
Sounds like you have MCS - multiple chemical sensitivities. Maybe MCS and EM both? Bummer!
Or could be Mast Cell Activation Syndrome, possibly, though I don't see how a reaction from MCAS could last that long. But then maybe the MCAS episode isn't what lasts so long. Could be it simply triggers a bad EM spell and we know an EM episode can last a long, long time.
My MCAS can definitely make me more sensitive to heat for as long as 24 hours after being triggered. So during that time I'm more likely to have EM episodes, even if I was lucky and the EM wasn't triggered when I had the initial food or chemical mast cell reaction. It's an odd disorder. That could be it.
I don’t know my erythromelagia is secondary to a motor nerve disorder. I got it after taking some medications for 10 months which I ended up having a terrible reaction to. They caused extreme muscle weakness which continued after stopping the medications leading then to atrophy and erythromelagis slowly developed on top of it as it worsened. My view is the medications left my spinal nerves so damaged that they now have no resistance to even the smallest chemical effects. When my erythromelagia flares at the same time my muscles particularly hand foot muscles get many fasiculations and weaken a bit more. The erythromelagia flares alongside worse motor nerve condition.
Needless to say doctors have been mysteries as I don’t fit their standard disease categoriesbie ALS etc yet I have this problem. I walk with crutches and have very bad foot leg and left hand atrophy.
So I’m interested in other people particularlybwho have secondary erythromelagia to other conditions.
Ralapure,
Since you've already been through the usual tests for autoimmune and neuromuscular disorders, have you considered seeing a neurogeneticist, maybe at Mayo or NIH? If you're not ready for that, due to travel and expense, you could start with a local geneticist. Some odd genetic disorders can cause EM, along with other odd symptoms, and even though they're considered "inherited" you can be the first in your family to be born with the mutation. Some of these don't necessarily appear in childhood, but rather later in life when triggered by something else. Seeing geneticists is what, eventually, helped me even though it took a few years and a few different geneticists. My insurance paid,, even for the out of state one, and I don't have great insurance. But they couldn't argue that I hadn't already tried all the local specialists first, as required. Sounds like you probably have already done that too.
Ralapure said:
I don't know my erythromelagia is secondary to a motor nerve disorder.The erythromelagia flares alongside worse motor nerve condition.,,,Needless to say doctors have been mysteries as I don't fit their standard disease categoriesbie ALS etc yet I have this problem. I walk with crutches and have very bad foot leg and left hand atrophy.So I'm interested in other people particularlybwho have secondary erythromelagia to other conditions.