Thread by @EDS__Warrior

@teaze_r @RedactedMom 1-) hEDS can not be detected w/ a genetic test. My child has an EDS gene in which I am positive that I am the one who passed it down. However they dismissed that gene mutation as a Variation of Unknown Significance, (VUS).
However scientists appear to be way ahead of that...

@teaze_r @RedactedMom 2-) ...geneticist because when I looked it up, having 1 copy of that mutated gene CAN cause problems. The mutation that I am talking about is a mutation in the COL12a1 gene. ncbi.nlm.nih.gov/pmc/articles/P…

@teaze_r @RedactedMom 3-)... My 1st sign of having this mutation was Clinical Carpal Tunnel Syndrome. My 2nd sign was Plantar Facitus, however at the time that I started having those problems I didn't recognize either problem as being a part of something as a whole. The next sign that I can think...

@teaze_r @RedactedMom 4-) ...of was pain in my left hip at 47. It progressed to my getting frozen in place in the front of a store, & then a few other places. Next I had shoulder problems the last being probably about a year ago. I had prior shoulder problems when my clinical CTS was at its...

@teaze_r @RedactedMom 5-) ...worst, which were the feeling of bugs crawling under my skin on the tops of my shoulders. The new problem which started when I was about 50, was labeled as "Frozen Shoulder." However after only about 4 visits of PT it went away. The next time I had another...

@teaze_r @RedactedMom 6-) ...shoulder problem, I decided to go to a Chiropractor, since the way my last shoulder problem went away was because of the PT manually manipulating my shoulder, & that is something chiropractors do from the beginning of treatment. That time my shoulder problem was...

@teaze_r @RedactedMom 7-) labeled "Upper Crossed Syndrome," however my shoulders only caved inwards when I tried to sleep, & again my shoulder was better within only about 4 visits after manual manipulation. Personally I believe each of those 2 shoulder problems were caused by a dislocation, or...

@teaze_r @RedactedMom 8-) ...maybe even just a bad subluxation that happened while I was sleeping, especially since both times I just woke up with these problems with no prior pain in those particular areas of my shoulders. I did have some prior pain on the outter side of my right shoulder, but...

@teaze_r @RedactedMom 9-) ... that just felt like someone hit me really hard there, but that hadn't happened, so it was a very puzzling pain. Anyway all of those shoulder problems happened within about 14 months. ...

@teaze_r @RedactedMom 10-) The next thing that happened was I got rid of my mattress since we were about to move. I borrowed one from another room where my teen has cats that don't roam around the house regularly, so only on special occasions (when they are watched & kept away from the plants). ...

@teaze_r @RedactedMom 11-) The mattress made me sick because it smelled like the cats, & whatever was on it that made me sick gave me MCAS reactions wich is common in EDS. I was tested for cat allergies during this time which came up negative, so all that was left was MCAS.
Next I got an all over...

@teaze_r @RedactedMom 12-) ...body rash that I don't recall being very itchy. The rash occurred during my high sensitivity/MCAS reaction to the mattress. It came on the same day that my husband used his deodorant while standing next to me. It was supposed to be "unscented,"
but it clearly had a...

@teaze_r @RedactedMom 13-) ...It bothered me right away, & I noticed the rash shortly there after. I've gotten headaches ever since I was a child, & as an adult they got worse until I finally realized it was scented items that were causing them. Perfume is the worst. My headaches progressed to...

@teaze_r @RedactedMom 14-) ...migraines sometime in my early 40's as far as I can remember. Ever since the mattress situation came about my MCAS seems to be what makes my body tingle. I also have muscle pain but that is probably because of the gene mutation that I mentioned which is equivalent to...

@teaze_r @RedactedMom 15-) ...having 1/2 of Myopathic EDS. Having 2 mutations on the COL12a1 gene would/should equal a diagnosis of having full Myopathic EDS, instead of the description of Bethlem like Myopathy etc., that is in the earlier part of this thread.

@teaze_r @RedactedMom 16-) ...Ever since the mattress episode of MCAS, I have tried several medications & have kept up the studying that I have been doing which is going on about 4 years now. None have worked so far too eliminate the pain & tingling. I am on LDN now which I have very high hopes...

@teaze_r @RedactedMom 17-) ... that it will help my MCAS & EDS pain. There are many articles which mention it helps: #EDSpain, #MCASproblems, #MCAD #Fibromyalgia, #CFS #MEpain, #Migraines, #ADD, #Autism #Depression #Neuropathy This article mentions POTS, (but I don't doubt there are many more...

@teaze_r @RedactedMom 18-) ...articles that mention LDN helping with POTS. I have also seen articles about it helping Long C0v!d. #LongCovidHelp
#LongCovidHelp_Kids

@teaze_r @RedactedMom 19-) ...most of the conditions that I mentioned in tweet 17 in this thread are more common in EDS. Some are cormorbidities like MCAS. POTS is also considered a comorbidity of EDS.
EDS, #POTS, & MCAS are often referred to as the trifecta in many EDS conversations.

@teaze_r @RedactedMom 20-)... By the way, I am not as hypermobile as my children. One of my children's hands is in my profile pic. They are extremely hypermobile & seem to have a double whammy of EDS.

@teaze_r @RedactedMom @threadreaderapp please unroll