Hello all. I'm TRB and my wife is J. I've been quietly observing this site for about a year. While reviewing stories, I've found the people active on this site to be quite caring and giving. It's wonderful to find a place like this to help make sense of our new reality. If I can indulge you all, I would like to tell our story. Hopefully your comments will educate and enlighten me about our current situation. I seriously don't know how to get my head around all the ambiquities clouding our diagnosis. You will know what I mean shortly.
About a 4 years ago, J started feeling pain in her right (dominant) hand along with some loss of dexterity. But not much at this point. J is an executive at a small manufacturing firm. Before she rose to her current position, she came up through the ranks of the accounting department. Unsurprisingly, she was a proficient 10 key operator. For those of you who don't know what that means, think accountant typing on an adding machine with their right hand while looking at receipts with there left. Moving their fingers rapidly while never looking at the keys. J did this daily and regularly for about 20 years. Obviously, as she moved up the executive chain she did less and less. but there was always some of it until the last few years.
J did not like the discomfort in her hand, so as anyone would, J started making appointments with medical professionals, assuming it was some sort of nerve issue. I thought it was the early stages of Carpal Tunnel Syndrome. That seemed to be the direction we were moving in, through the medical and Alternative medicine labyrinth. For a couple of years, nothing anyone prescribed including medicines and movement exercises helped with the problem. Her hand was progressing in its achiness and poor dexterity. At this point, the symptoms manifesting in her hand, were not noticeable to most people, even me if she didn't mention anything.
About two years ago, J really started to loose dexterity and fine motor abilities. As an example, signing her name became a chore, needing severe concentration. Holding a coffee in a plastic cup was dangerous. A couple of times she crushed the cup right in her grip. I remember that event well. It was the first time she seemed to be perplexed and scared, rather than annoyed.
During this period, J never showed any other symptoms outside of the right hand . About 2 years ago, the use of her hand was becoming limited, but with effort, still able to do many tasks. J could still use silverware, fold clothes open doors, etc. All of these tasks took concentration to perform, but she could perform them nonetheless.
Doctors had no idea what was wrong so they sent her to among others, a Dystonia professional. This specialty PT professional seemed the most positive and sure of the Dystonia diagnosis. J performed the many exercises prescribed and saw virtually no reverseral or relief of symptoms.
During an appointment at the University of MN, another specialist befuddled by J's situation, gave us a recommendation to see a Neurologist at the Mayo Clinic. We called for an appointment immediately. About fourteen months ago we met with our doctor at the Mayo for the first time. He did the same thing every other Neurologists did in terms of observational movement tests and questions about health history and such.
After about 30 minutes or so, he said he thought it could be one of two things and both were bad. He said he needed additional tests, including a DaT Scan. At this point I didn't want to know his thoughts further, until J had further tests. But , J asked him for the name of the disease he thought she had. He said, because of the asymmetrical (only right hand) nature of the symptoms and other things that weren't clear to me, he thought it was CBD. I never heard of it, and was to afraid to ask for more information. He didn't volunteer any other info other than it was progressive.
We came back about a month or so later and had a battery of test done including the DaT scan. J and I than made another appointment to talk about the tests. In the meantime, I looked up the disease and was floored, to say the least. J never looked up information on the disease, so I decided I wasn't going to tell her what I knew.
Our visit back to the Mayo to learn of the test results was almost exactly a year ago. The doctor showed us the asymetrical degeneration of the brain, illustrated by the colors from the DaT scan. He concluded the scan along with other observations he made, indicated CBD.
So now a year after that diagnosis, we have been meeting with a team of health professionals including a new neurologist at a new clinic specifically for people with Parkinsonian diseases. At this point J's hand is quite shaky and useless. the shaking is in her whole arm. No other part of her body is manifesting any symptoms, at all. J had a cognitive test done last month and the results came back completely normal. Not a single glitchy result.
About two weeks ago, J's new Neurologist shocked us after going over her cognitive tests. She said she doesn't think J has CBD. She thinks its Dystonia and she sent us to another Neurologist that is more suited to Dystonia and who will perform Botox treatments.
We met with the new Neurologist on Tuesday. After thorough observational tests and an impressive review of J's med records, he concluded that CBD didn't seem likely. Both doctors suggested that she should be showing more symptoms after 4 years from the onset of symptoms. One doctor said, "if you have CBD, you are the slowest progressing case on record".
So, here we are. confused and ambivalent. Thank you to anyone who decided to read this rather poorly written and confusing Tome, I can't think of a better place or group of people to get feedback from. Hopefully, through your comments we may learn more. I guess, a kind of crowd sourcing for opinions and experiences that will help us make sense of this diagnosis "roller coaster".
. Thank you in advance for your help and certainly for your attention so far.
TRB
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