New to posting, would like input about new diagnosis

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

22 Replies

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  • Hi riegerborer Welcome to this Haven! Whether J has CBD, distonia or something else totally unrelated, you are likely to find some answers to your short term problems!

    Keep looking for answers! They may not be nice, but often being forewarned is to be forearmed!

    My husband was diagnosed with CBD a few months before he died. It explained all we had seen happening over the past 6 yes or so.

    We discovered through MRI scan he had a benign brain tumour too.

    None of which helped us!

    If as you say, the scan J had has shown differences in the brain, then maybe you need to face up to the fact that it could be the cause of the distonia. It seems common for Parkinson's meds to be given to help, but sometimes they don't.

    I hope your medics keep looking for the cause and then can treat it. There are a number of people on this site who will guide you thru and live nearby.

    Keep fighting but also talking to each other. If diagnosis is correct, you will be able to support each other so much better. And it is a long haul!

    Keep posting. Jen

  • Hi honjen43. Iwas struck by the coincidence between your husbands illness and my husbands. My husband was diagnosed with an acoustic neuroma (benign brain tumour) in 2009 for which he had gamma knife treatment in 2014. As he never recovered his balance and was permanently dizzy the consultant felt there was something else going on. Finally in Jan this year after never-ending tests he was diagnosed with CBD. I am so sorry you lost your husband. My own has virtually lost his ability to walk, talk and see. He is never out as he is highly light sensitive. I am in the process of arranging some help to look after him as we both feel it has become dangerous on our own. Take care of yourself.

  • Thank you.

  • Thank you.

  • Welcome, TRB. I'm very sorry for your wife's troubles, and sorry to have no useful view on the varying and inconclusive diagnoses you have been given. Not knowing carries its own trauma; I do at least understand and sympathize. You describe it all very clearly. It has obviously been consuming your thoughts for a long time. Good news if it's not CBD, of course. I will offer one thought presented to us long ago: apparent abnormalities of the brain can be very misleading, as we don't know what percentage of healthy, asymptomatic people might have "abnormal" scans. (That said, the distinctive pattern of deterioration in my guy's brain confirmed a fairly certain diagnosis of psp.) I will be very interested in what other members of this community might have to say; I can't recall anything similar in any discussion. I wish you all the best that can be under these circumstances. Peace, Easterncedar

  • Thank you for taking time to reply to my post.

  • We're all hear to support and help in any way that we can.

  • Welcome to this site riegerborer . I'm quite certain that you'll find a number of caregivers or even some afflicted with CBD on this site who will provide you with support and maybe even answers to some of your questions. I find your experience thus far curious. The Mayo Clinic is one of a few leading institutions highly regarded for it's work in research, diagnostics and "treatment" of neurodegenerative diseases. Treatment is in quotation marks, because there is no real treatment for most Parkinsonian diseases. There are some pharmacological remedies that can help, at best... manage some of the symptoms. The symptoms you first reported are very similar to Carpal Tunnel to which there is testing for. Many years ago I had similar symptoms in both hands/arms which required surgery... Carpal Tunnel Release. You mentioned that the first doctor said that it could be one of two things... both bad. He said CBD... did he expand on the other possibility? DaT scans are very conclusive, where as some cognitive testing can be very subjective. Regardless, symptoms in neurodegenerative diseases can be very sporadic and may manifest themselves at different times and rates with each individual. CBD and PSP can progress at a slower rate in some patients than others. There is a site CUREPSP.org which you can visit for more available information. There work and research is not limited to PSP, but to all Parkinsonisms as I understand it. As I mentioned earlier, this forum is great site to learn and share experiences and even the occasional rant lol. Welcome to the roller coast ride.

  • Thank you

  • TRB I hope you find the answers you are looking for, my husband was diagnosed in 2014 with PSP, re diagnosed in 2015, he is now in a wheelchair, I hope you have some answers from other people of this lovely site. Sending you a big hug Yvonne x

  • Thank you

  • Hi, I am sorry for your situation. The one the thing I would say, however frightening the diagnosis maybe, it does help to have something to hang these strange symptoms on. If it is CBD, then you do need to know what you are facing. My husband has PSP, I think he has had for at least 20 years, five, since symptoms were a problem. So who knows how long these dreadful diseases take over somebody's life.

    You could try getting a personal trainer to help with movement, obviously check with the doctor looking after her, for Carpel tunnel syndrome. I know you have said your wife has tried loads of exercises, but for some reason, PT's do seem to use common sense, rather than medical knowledge, which I have always found works better. Even if they don't seem to be working, it does help keep muscles around stronger.

    Keep fighting for a proper diagnosis, at least then the correct professionals will be looking after your wife and I hope to all you think has holy, that it's not CBD or any equal evil disease!

    Lots of love

    Heady

  • Thank you

  • Hi

    My Mum has CBD. was diagnosed this year but has had symptoms since 2011. Hers started with poor Co ordination and balance and loss of use of left hand that is now very contracted. Her cognition is also poor and getting worse as is her mobility. She can't walk unaided due to balance and weakness.

    I went to a local support group and it really highlighted how every patient is different with rate of progression and also symptoms but all show abnormal bran scans in some way and one sided for CBD. The group leader husband was diagnosed with CBD 20 years ago but is still mobile independently and normal cognition.

    It has taken us a number of years to get the right diagnosis but when I read about CBD it made sense of what was happening to Mum. We had always thought it was Parkinsons But neurologists couldnt give an answer. Then Mum ended up in hospital this year with sepsis and they called a neurologist up to the ward and he diagnosed CBD and ordered more brain scans that confirmed his diagnosis as was one sided and in regions expected.

    What does your gut instinct tell you is happening now you know about the different conditions it could be?

    I really hope it isn't CBD but we were relieved in a way when we knew what it was. Mum only knows it is progressive and nothing can be done. I haven't gone into details of what the future holds as she gets upset enough. If she asks me questions I answer her but she hasn't asked that much so far.

  • Twenty years after diagnosis with CBD and still mobile and with normal cognition? That is very interesting. I didn't know that was possible, since most of the information I have had says that the progression of CBD is much faster than that of psp. Goes to show that everyone is affected uniquely, I suppose!

  • Yes indeed. Everyone is different. I think there can be an average prognosis given as they do say 6-8 years from onset of symptoms here in UK but no one really knows like any condition. Everyone is unique.

    Mum's speech is fine but someone else in the support group wasn't able to talk and she was early stages.

  • Very interesting, thank you.

  • Hi TRB, I'm sorry you have had cause to join this site but welcome to this great "family".

    I'm also sorry I can't say anything to help you but I'm certain there are other folk here who know about Dystonia and CBD and who live nearer to you, knowing how the health system where you are works.

    Your post was not confusing and thank you for sharing your story. I hope now you have joined us, you will continue to keep us posted.

    Best wishes to you both.

    Nanna B

    X

  • Reigerborer,I have read only one post; thats honjens, and I so agree with her that I almost haven't any words of my own...Keep fighting searching and go back to the man from Mayo clinic and ask if there were any definitive reasons why he said it was PSP? Obviously it's not a classic case of dystonia though I'm not sure how common it is....I did read up on it and due to the tremor, pain and that it seems to be..bilateral? I would say that that sounds like what you have written about your wife.....And may I add that It was through my own investigation, I found what was wrong with my husband...PSP....So like Honjen said, keep searching and asking questions...the more you know and understand , the better your questions will be when the doc says, "Well it might be this..."

    Good luck Rb...In the mean time, again as Honjen has suggested, continue to talk and love each other...If you are praying people , pray together ...As I have said many times before, the inevitable will come whether through this disease or a Mac truck not watching where he;s going;be prepared! so I will leave you with words from the Bible which give me much comfort. Keep us informed and if you just want to scream...we are hear for you.

    AVB

    Cast thy burden upon the Lord and He shall sustain the : He shall never suffer the righteous to be moved. Psalm 55:22

    Be careful for nothing , but in every thing by prayer and supplication with thanksgiving to let your requests be made known unto to God. And the peace of God, which passeth all understanding, shall keep our hearts and minds through Christ Jesus. Phillipians 4:6,7

  • Hi riegerborer

    My Mum has CBD but she is 85 probably had it about 6 years now but it's hard to say. She had several falls at home, always backwards, but she has macular degeneration, a heart condition and COPD so falls were always put down to those conditions. Her first obvious neurological sign was in 2013 and was very similar to how you describe J's trouble with the right hand. It started with the shaking then the weakness and slowly evolved to the whole arm. Mum was at first thought to have parkinson's but had no response to levodopa and a new neurologist came up with the diagnosis of CBD. As soon as I started to research it I just knew unfortunately that he was right. Mum was still able to walk until last September but in that short time has become completely unable to do anything at all for herself and both arms, hands and legs are contracted. The disease obviously moves at a different pace for different people. I do hope J doesn't have this dreadful disease but if the worse happens you will find this site invaluable. Just reading the posts often drives away the loneliness of caring enough to feel you can continue another day. I often think Mum is one of the lucky ones being so much older than most of the poor people on this site, most of them are nearer my age. It's just too sad. Good luck and fingers crossed

    Sharon

  • Welcome to the family my husband has both psp and Cbd so in a nutshell no two days are the same sending lots of love Elaine

  • Thank you

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