Well, this is a sorry tale. As in many families, having any kind of illness was considered unacceptable, or a sign of emotional weakness. So they both had some symptoms- far less than my son experiences- but, so very much was not spoken of or acknowledged.
My mother-in-law was chubby as a child, and not very good at any kind of sports . As a teenager she began to have some cardiac issues, we think- her memory is not good now, but it seems that's when it may have been noticed. In her 20's she was followed by a cardiologist. She had a lot of dental issues. She also had some falls and leg weakness, we think perhaps in her 40's or 50's but they really weren't spoken of. I only know this now.
My husband was supposedly mainly symptom free as a child, but he did have a little speech therapy. He was smaller than his peers- even considered at one time for Growth Hormone Therapy . He was not a very good athlete, but he was able to participate in all sports with his friends and had good endurance. He rode his bicycle every day pretty long distances, and was very active.He did have a lot of dental issues- cavities and was told he had"soft teeth". His clear symptoms began upon puberty- for him age 14. He began to have random episodes of falling down, needing to be helped up, needing friends to pick up his books and help him to class- doctors/family didn't know why. then he had his wisdom teeth extracted, and went into quadriparesis- paralysis of all 4 limbs- for about 7-8 hrs. He was brought out of it with IV potassium. He was eventually diagnosed with Hypokalemic Periodic Paralysis. His symptoms were noticeable from his teens through his late 20's/early 30's, diminishing over time.
Apparently my mother-in-law was diagnosed w/HypoPP after my husband- doctors began to look for the source in the family and realized it was her. So she was perhaps in her 50's when she was diagnosed and began to take meds for it. She NEVER TOLD my husband!!!
I discovered her dx when I finally got her medical records to forward to my son's doctors( with her permission) My husband and I were shocked- we had never been told .
As I was searching for answers to my sons problems I was told by my husband, mother-in-law, farther-in-law that he couldn't possibly have "what my husband had" . their reasoning was that my son had symptoms so young and so many more problems. The pediatrician also agreed. Ughhh!
After a difficult search for answers and a misdiagnosis of Ehler's Danlos Syndrome I finally asked yet another physician ( who I sought a second opinion with) if they felt Periodic Paralysis was a possibility . This doctor was honest- saying she wasn't sure what it was , but said it wouldn't hurt to check. I contacted Dr. Griggs in Rochester, NY and he saw us in 3 weeks. I brought my husband this time, too, and Dr. Griggs ascertained fairly quickly that he probably had ATS, as well as my son. Rochester ran genetic testing on all family members one by one, the outcome being that my son, my husband and my mother-in-law were all dx'd w/ATS.
So -each family member had a different presentation, at a different age, with huge variation in degree of symptoms. Because of my in-laws nature regarding never speaking of medical issues I knew almost nothing about my mother-in-law having any symptoms. She did have some mild weakness but never told. I actually told Dr. Griggs she had no weakness when he asked! Well, talk about getting the issues out in the open in our family!
Now, almost 2 years later, she and my husband are both in studies for ATS in Rochester, and my mother-in-law tells us if she's feeling weak. My father-in-law thinks she's gotten worse- I say she's as she was- she's just telling now! My husband still finds it upsetting and difficult to speak of any of this. He still often diminishes my son's symptoms and tries to pretend they are not there. He has come a loooong way, but is still in a great deal of denial, which makes everything so much harder on everyone, especially my son.
But I do believe every month that passes brings some tiny improvement in his attitude, so eventually we'll all be in a better place.
So- a long answer to your question?! I hope this helps in some way. Good luck this week. Please keep us posted.