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My wife Deonna has been struggling with a Neurological issue over the course of the past few months, she’s lost the ability, to drive or even walk. Honestly trying to get effective treatment and straight answers has been a nightmare. We’re in touch with, and hoping to visit the Cleveland clinic soon.
Our story…
A few months ago my My beautiful wife and mother to our children began to feel very sick, constant fatigue, headaches, and general body discomfort and pain. She began seeking help and treatment, she was at first diagnosed with CMV a type of mono, and was told her immune system wasn’t fighting it. After some continued ineffective treatment, she was then diagnosed with fibromyalgia, and was taking more frequent trips to the ER. Meanwhile her symptoms began to get worse, in the beginning, was weakness or poor motor function in her hands, trouble walking, especially with stairs, vision problems, and some mild tremors. We began to suspect MS, as did three of the doctors she was seeing at the time. One night the shaking in her feet was really bad and she asked me to hold her foot, I could tell that all the muscles in her foot were contracting with full force, and that she had no control what so ever. This quickly evolved into her whole body shaking uncontrollably and having what appeared to be a seizure, and up to this point none of her symptoms were anything close to this, so I called an ambulance. She could barely speak and was in a lot of pain. They took her to Kenmore Mercy, and discharged her 7 hours later in roughly the same condition she arrived. Still shaking, trouble speaking, scared, confused, hopeless….like they didn’t even care. So a couple hours later we went to Buff General in the hopes that someone from their highly esteemed Neurology department. Enter Dr Melissa Rayhill, who jubilantly enters the room with a team of students behind her, waxing poetically about how she’s a mother, and she understands her pain, and how frightened she must be and that we’re gonna get answers. She was certainly kind enough to do a brain and spine MRI, which had ruled out MS, and she said it has to be Functional Neurological Disorder, which is what they Diagnose you with, when they haven’t found, or don’t know the biology of what’s causing the symptoms. And that was the last we heard from the good doctor before Dee was dumped on an observation wing with no more answers or explanations, and the next Doctor to see her was visibly annoyed and told my wife that the only treatment was, physical and mental therapy and that this is all caused by an anxiety disorder. To which my wife was having a hard time accepting since she takes care of herself, eats well, practices yoga regularly, and works on and strives to be the best mother, wife and person she can be with admirable effort.
We took their referral and went to our first appointment at Dent Neurology, they echoed what Buff Gen said and refused to do anymore tests, except any ambulatory ones( ie. put your heel on your shin, or try to resist my hand movement) and said that Physical, Occupational, and Psychiatric, therapy were the only treatment.
She followed up with those appointments, and they all roughly said, “what are we to do? This is clearly a neurological issue” and surprisingly Dent suggested that we get a new PT and psych after 1 visit. This is just a taste of what we’ve been up against, we’re in touch with and hoping to see the Cleveland clinic soon.
My wife can no longer walk to the park, or druve the kids to school, or chaperone a field trip.
She’s had many episodes of being hospitalized, losing the ability to speak for days at a time, and treated like a nuisance by the medical field because she wants answers. I don’t expect anyone to read all this but if you made it this far we thank you.
Love and Peace
Our story…
A few months ago my My beautiful wife and mother to our children began to feel very sick, constant fatigue, headaches, and general body discomfort and pain. She began seeking help and treatment, she was at first diagnosed with CMV a type of mono, and was told her immune system wasn’t fighting it. After some continued ineffective treatment, she was then diagnosed with fibromyalgia, and was taking more frequent trips to the ER. Meanwhile her symptoms began to get worse, in the beginning, was weakness or poor motor function in her hands, trouble walking, especially with stairs, vision problems, and some mild tremors. We began to suspect MS, as did three of the doctors she was seeing at the time. One night the shaking in her feet was really bad and she asked me to hold her foot, I could tell that all the muscles in her foot were contracting with full force, and that she had no control what so ever. This quickly evolved into her whole body shaking uncontrollably and having what appeared to be a seizure, and up to this point none of her symptoms were anything close to this, so I called an ambulance. She could barely speak and was in a lot of pain. They took her to Kenmore Mercy, and discharged her 7 hours later in roughly the same condition she arrived. Still shaking, trouble speaking, scared, confused, hopeless….like they didn’t even care. So a couple hours later we went to Buff General in the hopes that someone from their highly esteemed Neurology department. Enter Dr Melissa Rayhill, who jubilantly enters the room with a team of students behind her, waxing poetically about how she’s a mother, and she understands her pain, and how frightened she must be and that we’re gonna get answers. She was certainly kind enough to do a brain and spine MRI, which had ruled out MS, and she said it has to be Functional Neurological Disorder, which is what they Diagnose you with, when they haven’t found, or don’t know the biology of what’s causing the symptoms. And that was the last we heard from the good doctor before Dee was dumped on an observation wing with no more answers or explanations, and the next Doctor to see her was visibly annoyed and told my wife that the only treatment was, physical and mental therapy and that this is all caused by an anxiety disorder. To which my wife was having a hard time accepting since she takes care of herself, eats well, practices yoga regularly, and works on and strives to be the best mother, wife and person she can be with admirable effort.
We took their referral and went to our first appointment at Dent Neurology, they echoed what Buff Gen said and refused to do anymore tests, except any ambulatory ones( ie. put your heel on your shin, or try to resist my hand movement) and said that Physical, Occupational, and Psychiatric, therapy were the only treatment.
She followed up with those appointments, and they all roughly said, “what are we to do? This is clearly a neurological issue” and surprisingly Dent suggested that we get a new PT and psych after 1 visit. This is just a taste of what we’ve been up against, we’re in touch with and hoping to see the Cleveland clinic soon.
My wife can no longer walk to the park, or druve the kids to school, or chaperone a field trip.
She’s had many episodes of being hospitalized, losing the ability to speak for days at a time, and treated like a nuisance by the medical field because she wants answers. I don’t expect anyone to read all this but if you made it this far we thank you.
Love and Peace
Organizer and beneficiary
Deonna Townsend
Beneficiary