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PSP Association
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CBD

Not sure if I have been correctly diagnosed as having CBD. My right foot has a slight tremor occasionally and I just have to move it for it to stop and my right-hand feels a bit heavy and I now lose my patience and get angry very fast. This is the only change in my normal life. I did a brain MRI and was told my brain has shrunk a bit and some areas have patches where there is no blood flow this may be due to my high blood pressure. Was I diagnosed correctly?

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That is hard to say really. From your post you would be very early in diagnosis and your symptoms as described could be a variety of things especially since you mentioned high blood pressure also.

Ron

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Thank you for replying. I have gone to 3 neurologists all gave me different opinions and Bahrain is a small island and I doubt they have exposure to all kinds of diseases and ailments. So was not really sure if I was diagnosed properly. So was looking for answers here if anyone else had the same symptoms.

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Hi leyana, welcome to this forum. Few of us here have that much understanding of PSP/CBD at such an early stage. Few of us are professional medics. Majority understand what you are experiencing as you come to terms with your diagnosis.

If you have seen a neurologist, he will be familiar with CBD. Parkinson's is often diagnosed before CBD is considered, since there are physical crossovers in some symptoms.

My husband had a foot that did not lift as well as the other. He was never dextrous but his strength also diminished. First diagnosis was Parkinsons, and by a cousin who was a nurse! GP did not consider such until 2 yrs later and by that time it was atypical.

If you are not happy with your diagnosis, you are at liberty to ask for a second opinion.

If that second opinion confirms the diagnosis, you have 2 points in your favour! You have been diagnosed at what may be an early stage, and you have us to help you through!

In which case, stay positive! You have time to gather your thoughts, so take a deep breath and consider what is most important in your life, gather a support group around you and make sure you have made a will.

You will find so much help here, and plenty of support on your journey.

Stay in touch!

Hugs

Jen xxx

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Thanks, Jen it is so comforting to find someone to talk to who has been there. I have gone to 3 neurologists all gave me different opinions one said nerves the other early stages of Parkinson and the 3rd CBD. Bahrain is a small island and I doubt they have exposure to all kinds of diseases and ailments. So was not really sure if I was diagnosed properly. I have accepted what I have I cried and have settled now but my heart accepts not sure if my brain does. I do not want to worry as I have high blood pressure too.

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Hi Leyana, and Welcome - although so sorry that you have to be here.

My husband has CBD. He was originally diagnosed with 1) Mild Cognitive Impairment, then 2) Primary Progressive Aphasia, then 3) PSP or CBD then 4) confirmed likely CBD this past summer. He has increasing cognitive impairment, loss of speech and all communication methods (including writing & keyboarding) shuffling awkward gait then for the past year, the clincher: an "alien limb" left side. He has also had apathy for years. First symptoms approx 2013.

Compared to that you appear to have received a diagnosis very early! Sounds like you have hardly any symptoms - Do you mind sharing why your neurologist decided on CBD?

Whatever the case, getting an early diagnosis is like a wake-up call: Try to do as much as you can now that you have always wanted to do! By the time we were clear on what was happening (plus add in some time for denial - ) we were too late for travelling and adventure.

I hope there are good times ahead for you. Do keep in touch and tell us more about yourself :-)

Best wishes

Anne G.

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Thank you, Anne, for getting back to me. I feel that I have been misdiagnosed. The 1st neurologist said it was nerves the 2nd said early Parkinson and asked me to take Sinemet 100mg which I did not take as I felt I did not have Parkinson she ordered a brain MRI which I showed to a 3rd Neurologist who said I had CBD and I should not take Sinemet as it would not help. According to him, my brain has shrunk slightly and there are some areas where the blood has not reached and he says this may be due to me having blood pressure. No one is telling me what I should be doing..

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Can I ask what is your situation? How old are you? Do you have family around you? Could you get advice from overseas, say London?

Whatever the diagnosis, it is a wakeup call and a time to take stock, just like any other life threatening disease.

All suggestions of a diagnosis by the neurologists you have consulted are not unheard of here for someone with a longer history of similar illness. If the third one has seen an MRI, she may have some knowledge of brain anomalies. Are you able to go back to her with further questions?

Whatever you do and whatever further information you are given, I think most people here on this site would advise you to keep as active as possible and stay healthy. Eat healthy food. Walk, join a gym, go on long treks if you are strong, do as much as you can to improve strength and fitness and push out your limits. Exercise will also help your blood pressure as long as it is regularly monitored and treated by your doctor. Dance, enjoy yourself while you feel well! Stay positive.

And stay in touch. Talk to us and we can be there with you wherever the journey takes you.

Hugs

Jen xxx

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Hi Leyana

Gosh, what a horrible limbo your'e in.

I'm so sorry.

I'm in agreement with the other posters here.

If your lucky its a minor infarct and our brains shrink a little with age anyway.

Have you read the information on the PSP Assoc. Website?

Different people have different symptoms to the fore, so the list of symptoms and disease progression path is slightly different for different people.

pspassociation.org.uk/infor...

You will find a drop down with clinical briefings on this page too. Knowing about PSP and CBD will at least mean you know what to look out for.

It takes a lot more tests than an MRI scan to diagnose these very closely related illnesses. If they only did a scan then I too would feel nervous of any diagnosis.

Keep coming back here as you need or want to. We're herw for each other and there is no such thing as asking too many questions!

Best to you

Kevin

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Thanks Kevin for your support and information. Am seeing another neurologist and will have to accept whatever the verdict. It is my faith that keeps me going

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Faith is a powerful thing.

It must be very hard for you right now.

Stay strong and

Good luck.

:)

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Yes it is I am not sure if it is denial or my faith..

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Hi Mum started a little like you with one foot slightly sticking when walking n causing her to trip then the alien limb in her left arm diagnosed initially as Parkinsons as had tremors in hand then CBD . A lot of apathy but we put that down to bereavement as we lost my dad this probably masked some of the symptoms for a while last six months confusion and dementia type symptoms have kicked in big style . To be honest all these linked illnesses are horrible so I think I have looked more at what is been presented and deal with that in a way the diagnosis for me is secondary as no cure ..... that sounds awful I know but the disease is unforgiving keep smiling 😊x x

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Thank you for your support let;s hope my progress is slow and I can bear it all

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Good luck Leyana

You know where we are and were here for you whenever you might want us.

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For what it's worth, Leyana, my husband's first symptoms were around 2013 (that I noticed, that is...) and he is still eating, walking and communicating (albeit the last with great difficulty). He has cognitive 'slowdown' but no dementia. His progress is much slower than many with CBD - so it is possible to have a very slow progression!

Best of luck to you, and as the others say: do keep us posted!

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Thank you

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Dear Leyana

I am sorry to hear that you have been diagnosed with CBD. Are you out in Bahrain for long?

We had many different diagnosis prior to my husband finally being diagnosed with CBD early in 2016. I kept a record of all the 'odd' things that were happening and dated them, which gave the consultant a much clearer picture of what was going wrong and how quickly, than I could have recalled in a consultation. It may be worth your doing this too if you notice other things happening.

Honjen43 and Raincitygirl have already given you some excellent advice so take it, especially where it comes to doing all the things you want to do whilst you can. Even if the diagnosis is alterred again something is not quite right. I am so glad that we visited New Zealand when we did as we certainly could not have done so a year later.

Please keep in touch and let off steam when you get frustrated or angry rather than bottling it up. People on this site will undertsand as we have all been there even if we might be a carer rather than a sufferer.

Good luck

Ali B

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Dear all. I have a final verdict now. I have the early stage of Parkinson and not CBD as diagnosed before. I feel at ease now that I know what I have and like Anne said this is a wake-up call caught at an early stage. I have been prescribed Sinemet 25/100 starting with a half tablet for a week and then progressing to 1 tablet 2ce a day and a half tablet at night since I sleep well. My only issue is a slight tremor in my right leg and hand but more on the leg. Have also been prescribed COG10 a strength of 120. I have started exercising with exercises I found on YouTube and I walk every day for half an hour. Are there any foods I should be avoiding? I thank everyone who supported and gave me advice God bless you. Love and hugs

Ella (Leyana is my grandchild's name. It would not accept Ella)

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Dear Ella, How ironic to be saying "Hurray"! ...but it's not PSP or CBD so it's a glass very much half full :-) I'm glad for you and I know you'll work hard at the exercise (don't forget some weight-bearing work too!-) I wish you a long and happy future.

Hugs

Anne G.

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Well one nvr knws if it will develop into CBD. But for the moment i accept what i have and am trying my level best to exercise. Thanks Anna

Best wishes and good luck to all

Ella

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