My daughter has had issues her whole life. At one year old she was on formula because she couldn’t swallow baby food and was still like a newborn baby. After several years of physical, occupational and speech therapy she was able to walk, talk, etc. However, she could not run. A few years after she stopped physical therapy she started to decline but was still able to do many things. The last two years she has drastically declined. She needs help dressing, bathing, eating, etc. She can no longer climb stairs as she gets severely fatigued. She has never been able to go downstairs due to low muscle mass, proximal muscle weakness and vision impairment. She has also always had hand weakness but is now getting involuntary movement in her hands and feet and is starting to have emotional outbursts and cognitive decline (is forgetting things she normally knows well). She has started seeing a neurologist who says she has proximal muscle weakness, hand weakness, hyperreflexia and spasticity. She wants me to record uncontrollable movements. She also has waddling gait and knees are close together but ankles far apart. They also had her checked for scoliosis due to one shoulder and hip bone being significantly higher than other but that was negative. She had an MRI a little over two weeks ago and have heard nothing. Don’t know if this is good or bad. Has anyone had any similar issues. Is so much more but not sure how long I can make this.
Hi, reading all the problems and symptoms your daughter has, makes me wonder if she may have HSP rather than MS.
HSP is not that widely known. It stands for Heredity Spastic Paraparesis. I was wrongly diagnosed with it, instead of PPMS for a while.
It can skip generations, or just start anywhere. It is often present from birth.
Look it up and ask your neuro about the possibility of it.
Boudsx
I am sorry that your daughter has had to endure such poor health. It must be heartbreaking for her parents too.
Nothing to offer, I’m afraid, just good wishes and the hope that you all start to get a bit more clarity on your daughter’s condition and what might be done to help her.