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MSA (Multiple System Atrophy)

Parkinson's Disease | Last Active: 5 hours ago | Replies (7)

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Jim’s first sign was his gait changed to smaller slower steps, then like baby steps & he felt a little unbalanced. That prompted him to see a neurologist (not movement disorder specialist). The first doctor told him to do PT which improved him from 30 to 70% but he failed to continue the exercises after PT appointments ended, so his gait got worse. Next symptom was speech difficulty; somewhat garbled & hard to understand. And then he started the REM sleep disorder. And his handwriting became terrible; fine motor skills declined. Two years later that doctor suggested PD so he tried carb-levo which was ineffective. I contacted the National Parkinson’s Foundation & found wonderful help from a woman who was so gracious & knowledgeable. She said we needed to see a movement disorder specialist & she sent a list of them in our area of Texas. Next step was seeing a specialist at UT Southwestern Medical Center in Dallas in their neurology department. He suggested Normal Pressure Hydrocephalus so a brain mri was done. However, that was clearly ruled out & he was given the diagnosis of MSA-Type C because the mri showed moderate atrophy in the cerebellum & brainstem. So the next step is getting an appointment with their MSA Clinic & the hope of qualifying for clinical trials. The diagnosis was coupled with a physical exam done in the office (walking, turning, eye movement, etc). An MSA diagnosis is their best educated guess because it can only be confirmed through brain autopsy. When Jim asked the doctor what can be done, he answered, “Exercise, PT, OT, speech therapy. Exercise is paramount.”

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Replies to "Jim’s first sign was his gait changed to smaller slower steps, then like baby steps &..."

@kaymirkes
The shorter walking stride, small handwriting, slight unsteadiness and slower movements are all familiar to me too. One key feature of MSA is early presentation of urinary problems (difficulty voiding , urgency and incontinence). Exercise helps with Parkinsons and Levodopa helps with motor problems, but not so much with MSA. MSA progresses faster than Parkinsons and can lead to disability within 6 years. No current tx for MSA outside what may be available thru a clinical trial. You are not alone - sending love and a hug your way. B