Could there be mold in either location you and your sister spent a lot of time together in 2012? Just curious. Not sure what to think of that theory, but we did find mold in our old house when we were moving and had to get rid of the furniture. I didn't think a whole lot of it then, but it's the only thing I can say I know we were exposed to. Also did you have any renovating going on in either location? Sheetrock dust, solvents, paint fumes, floor refinishing, etc? We also had that going on, so I honk one of the two are linked to putting the genetic switch into overdrive for us. What else does your son say?


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I don't think we have any mold but we were having our bathroom refurbished at time of onset.

My son had mentioned crawling and that his underwear feels painful. The proff, has said not to read to much into this at this point in time. We have to wait 3 months for results from sodium channel mutations. Did you ever have these tests Healthgirl?

How old is your son?

He is only 5. My other son seems o.k who is 9. The proff said you can have the mutation but it doesn't always lead to symptoms so this is why there is no past family history.

Did you have symptoms as a child?

When I look back, I had mild dysautonomia, heat intolerance, joints that would crack out and back in, but was pretty much a normal kid and it probably all could have fallen under an anemia diagnosis since I was anemic. Later in my early twenties, my SI joints would go in and out and cause some problems here and there and I became hypoglycemic, but controlled it with protein every 2.5 hrs and was fine, Thirties I felt better than I ever did, knew how to take care of my idiosyncrasies and had 3 kids by then. Two of my three had some of my "sensitivities", but the other had none. I can tell you that never in in my childhood or whole life until I got sfn, did I or my kids have nerve pain, crawling, numbness, or tingling. So I am having a very hard time accepting that a mutation is the answer to this. Obviously we were genetically predisposed to what ever happened, but life was pretty normal before this. Maybe I'm just in denial.

Hi Healthgirl - No i never had problems as a child. We were always quite well. Our situation was similar to yours, we all got symptoms about the same time. I mean, within weeks of each other. I asked the prof. and he shrugged his shoulders and didn't think it was connected. Healthgirl, do they they think you have EDS?

Yes, that was the conclusion reached by my new young neurologist. She had all the assorted files on my case and had two children (med students) ask questions about the me and the kids, as did the genetics department who had no solid answer as to why we could all be affected so severely in the same time frame. There answer was "something heritable/connective tissue realm/ nervous system and then sent me to rheumatology. Rheumatology sends me to neurology. They send me back and fourth to each other. They all scratch their heads and say it must be autoimmune on top of EDS, but no one wants to keep trying to figure this mess out or try treatments.