Drooping in left side of face

[Blueberry637]

Hello. My mom was diagnosed with CBD last year after many visits to different neurologists and having taken many MRIs, C/T, x-ray and blood work of her brain, neck, left shoulder and back. Her symptom started 5 years ago in 2019 when she was 73yrs old, but none of the neurologists could figure out what it was until we visited a movement specialist in NYU Langone in Manhattan in 2023. It started with her left hand. She was working out, swimming, very fit for her age and no medication. She was told she had carpal tunnel, then traveled up to her elbow. She felt as though her hand was weak and would drop things. She lost her thumb muscle and could barely move it. Cooking became very difficult. Opening water bottles became impossible, then slowly she started to not perform the simple daily task using her left hand. Now her left hand is pretty much useless. It just hangs there. She can’t raise her arm more than shoulder’s height. Her bicep is always stiff and can’t relax her arm. She is also in a constant state of dizziness so she can't walk by herself. Her left shoulder is dropped, leans to the left, and her center of alignment is off. She had many falls when she was living by herself for about 2 years, which I never knew about. I moved her in with me after she broker her arm last year and she’s had numerous falls after that. It’s been a rollercoaster of in and out of the hospital. We have been going to different drs, PT, OT, VT. I’m trying to get her the best care possible, but nothing seem to help with her dizziness, which is our major concern. Now the left leg feels awkward and when she walks she drags it slightly. We tested her for a stroke, but that came out negative. We also did a DatScan and PET scan and it showed a decrease in dopamine level. She tried Carbidopa/Levodopa but it didn’t help at all. We changed her diet, went gluten free, sugar free and there’s been improvement in her sleep. I’ve been seeing a slight drooping in her left side of her face (corner of her left eye and mouth) but since the dr ruled out a stroke, I’m wondering if that’s one of the symptoms of CBD? Has anyone seen a drooping on one side of the face?

[Kelmisty]

Hi, my Mum has CBD and PSP the left hand side of her face is also drooping recently. This is the same side as her twisted arm and leg, I think it’s all part of the same dystonia as the consultant said she had it all down the left side. But yes like you I initially thought she’d had a stroke.

Oh and the dizziness is here to stay unfortunately, some days will be worse than others but nothings helped my Mum on that. She hates it.

[Blueberry637 in reply to Kelmisty]

Thank you for the post. My mom was convinced that she had a mini stroke. Now I can tell her it’s part of her condition, unfortunately.

[ARutzen]

hi, yes my mom had the exact same symptoms, as I was reading this I thought I had written the post. I’m not sure what area of the brain functions with facial movements and such, but it can absolutely alter their appearance and make them look like they’ve had one. At one point mom had one side that appeared to droop & the other was still “her”. When the arm became ridgid we tried Botox injections and it helped with the stiffness but not the use of the hand or arm

[Blueberry637 in reply to ARutzen]

Thank you for the post. It confirmed that this is part of her condition. It’s sad that we have to see them like this and can’t do anything for them. Does your mom take any medication that helps with any of her condition?

[ARutzen]

It is, very sad, a hard journey for them and us. For medications Gabapentin for nerve pain, also some antidepressants, and Lorazepam which I think is for anxiety but I heard it also helps with seizures so it may help with some of the involuntary jerking. Those are the ones I can think of off the top of my head. The Botox was only done twice but I feel like it would be beneficial if it was more easily available to get if you can’t get to the Doctor. Sending love and light, please don’t hesitate to reach out here or on facebook, always like to help when I can 🙂💕