NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Newbie looking for advice about symptoms and appointments › Reply To: Newbie looking for advice about symptoms and appointments
My MIL is doing well. Each day is better than the last. I haven’t learned much about the family yet to try to piece together an EDS picture but I am fully convinced now that my husband has it. He has stretchy skin, paper scarring, poor wound healing, and using Dr. Tinkle’s book about Joint Hypermobility has helped me pinpoint some other symptoms of his. When he was younger, he could stretch his arm behind his head to the point that his left elbow could touch his right shoulder. In one of Dr. Diana’s videos, she mentions pulling on the arm and seeing a little dip in the shoulder area. My husband’s left shoulder does that. His ribs/sternum crack very loudly when he stretches his arms above his head, his ankles bend outward, he tries to pop his knee by twisting it sideways, he had Osgood Sclatter’s, he could sit in the W shape, he could raise his feet near his head, he could pull on his knees to create the floating kneecap thing, he has sleep apnea even though he has never been overweight in his life, and the IT band in his left leg is solid as a rock from being super irritated. His legs turn outward and his left leg ends up twisting so much that his foot will point to the side instead of in front of him and he won’t even be aware of it. His IT band was trying so hard to get his leg back in position that it is now a big tight, painful mess. It was hurting him so bad last year that he couldn’t even walk. I’ve found that his ribs and shoulders also seem to collapse in on themselves when sleeping like mine do. Having pictures to point to and watching some videos on Youtube helped him remember a lot of things that he could do. He isn’t too badly affected as far as pain and weakness goes just yet. I’m hoping to get the diagnosis process started for him soon so that everything else can get checked out. Especially his heart. Sleep apnea and EDS can be rough on the heart.
Thanks for the tips about optometrists! I have never been to one in my life and I am really curious to see what they think about my floaters. I’ve had them since I was little but there has been an increase in the past 10 years. If I look at a white surface, I will see sooooo many floaters. There is one that has always been in the middle of my vision and there have been a couple days where it will line up with my line of sight perfectly so it would cover whatever I was trying to read. I ended up reading with peripheral vision which is an odd experience. Thank goodness that is not it’s standard position.
I was having a decent couple of days and I was curious if a pattern would hold true. It seems like it might be. Over the past months, I have noticed that I might feel okay-ish for 3 days to under a week. Enough so that it is dramatically noticeable of “Oh! I can actually get up and walk without too much trouble. I’m only feeling a little pain instead of lots of it. My balance is okay too” and then it inevitably would fade and the symptoms would return. Starting yesterday, pain and fatigue started creeping back in. I’m curious to see if the propranolol will change anything about the intensity of the returning symptoms. It’s too soon to tell just yet.
Oh! And I got my 23andMe results! I have to poke around a bit but I do have a potential mutation in an MTHFR gene so I’m intrigued to see where that may lead. Lots of work to do! 😀
I hope everything is going well in your neck of the woods!