PSP Association
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My Disease

Was told by a Nurolagist that i may have C.B.D last july 2017 .Only symptoms i have is dizziness every morning till about 4.00 pm then i feel great dizziness gone. some days it last longer or shorter, it starter approx 3 years ago. I went swimming in a lake and came down with a bad infected left ear. My doc cleared this up with Antibiotic. A few months later i starter getting dizzy with headache, i had many scans and O.R.L examination found nothing. They sent me for a M.R.I. saw a Nurolagist I told him my brother who is 75 years old, he is now at the last stages with C.B.D. the Nurolagist said my brain has deteriorated and I have C.B.D.I still think its a terrible dream. Will have another M.R.I this March then i will see the Nurolagist in July 2018. I found something interesting for Dizziness and balance i tried everything Ibuprofen helps Les Parker.

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Well it is very sad that you both have the same thing. Odd that you have no symptoms apart from dizziness though? Although you did mention balance to? Is it very bad?

Interesting too that Ibuprofen helps. Has anyone else come across this happening to them or a loved one?

Marie x

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Hi Marie Its about ibuprofin it helps my dizziness and balance i found this on the internet just ask the question about dizziness and Ibuprofin you will find the subject. Another product i tried is a COLD & SINUS witch i found recently because i have a cold the products are sold in every pharmacy i only started this week, find it works better than Ibuprofin because there are two medicinal ingredent one is IBUPROFIN and PSEUDOEPHEDRINE HYDROCHIORIDE so far it looks good. As for balance it was not that bad my nurologist told me i should use a cane, I still don't. How ever when i go shopping i use a shopping cart and drive my car. My wife also drives if i feel a little more dizzy.I will tell the Neurologist about Ibuprofin and cold pills next time i see him, This is my first time writing i'm NEW which you the best LES.

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Hi Les;

My husband has been diagnosed with CBD based on MRI, and numerous symptoms. I'm curious as to how the neurologist decided CBD for you with no symptoms other than dizziness?? What did (s)he say were the reasons for the diagnosis?

For what it's worth, although my husband has a lot of symptoms, he is still walking, continent and well in many ways. He's about 5 years in. I hope he will last long enough to try a new medication which we all hope will arrive some day!

Anne G.

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Hi Raincitygirl My neurologist looked at my MRI and found my brain had degererated a lot plus I just told him about my brother who was seen by another neurologist he then said you will get CBD. And i still only have dizziness and lightheaded, I will be seeing him sometime in June or July. I'm very worried. Not much i could now just wait, I'm taking ZOLOFT trying to stay calm. I will be 77 May 2018. Les.

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Hi Les: Still curious...CBD is not believed to be genetic (Robin r u reading? Isnt this true?). Do you mind sharing what caused your brothers diagnosis?

Anne G.

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Hi Anne. My brother is 75 years old, I only found out my brother had this desease CBD about two years ago.My brother saw another Neurologist in Saint Jerome Quebec Canada he was sick for a long time maybe 4years . His personal Doc taught he had Parkinson but then they saw he had all the symptoms of CBD, We have the same family Doctor. He feels i don't have CBD . As for my dizziness he can't find nothing wrong with me, I pray his right. He also said in 25 year he has only seen two patience with CBD , my brother and another patience. I saw my brother last week at our local C.H.L.D. a place for very sick people I don't like going there it makes me very nervous. He can't use his legs or hands they feed him. he has problems with swallowing, they do not put a feeding tube. they will let him go.I have recently prepared my situation in quebec its approved death with medical assistance. with the Goverment and a Notary.I'm not used to writing I make mistake.I'm french and english ,sometimes I write in french .Not to good with computers. Have a good day raincitygirl leslie parker male 76years old.

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Hi Les: I'm also Canadian (in BC near Vancouver) - but unlike you I am not bilingual! Your English is so much better than my French ;-) You do not need to apologize!

I would like to send you a video of an expert Neurologist comparing the difference between PSP, CBD and MSA. It is useful I think. I will post it on this website once I have time to figure out how to do that - but meanwhile, I will send you a private message through this site, and we can connect so I can send it to you. Perhaps it will inspire you to find another neurologist to get a second opinion?? If you have to worry, better to at least worry about the right thing, non?

Anne G.

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Hi Les. My name is Julie, I am 54 and was diagnosed with CBD 3 years ago. My symptoms were very different to yours - no dizziness but my left arm and leg are affected. My diagnosis was confirmed by my neuro = left arm not swinging and walking with my left foot turning in and slightly dragging. I had many tests, some not even done my some consultants in the UK. I am also taking part in a highly respected research program run by University College London who have been checking me every 6 months. As far as I know its almost certainly not inherited - and symptoms do vary. I do have a problem with walking but that's mainly because my leg got used to me walking a certain way. I now wear an ankle brace that has helped me immensely. I still lead a full life although fatigue does get me - I just have a nap ! Try and remain positive - it sounds as though even if the diagnosis is correct, your symptoms seem very mild. Julie

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Hi Les, diagnosed last June and like Julie my symptoms started with my left arm going very rigid and my left leg dragging. I also woke every morning feeling very shaky but not that it was outwardly noticeable and my brain felt as if it was in a fog. All started 6 months after my heart attack and being placed on high dose statin,although attack was not down to heart disease and I have low blood pressure.

My GP took me off the statin and the brain fog cleared almost immediately. I had an MRI scan, lumber puncture and electrical testing, all showed nothing. However,at my 6 month review I saw a different consultant who sent me for a Dat scan. I had the results this week and they have now diagnosed as Parkinsons. This has heartened me a little as although there is no cure, I know people who have this and are coping well. I do not need medication yet.

I have also been seeing a physio once a month and by doing the exercises virtually every day I am managing to keep living a reasonable existence. If you have not had a second opinion it might be worth considering.

Just thought I’d share my experience , but as you are having to deal with your brother you are already aware of this awful disease. Mine may still turn out to be CBD as all these neurological problems are very hard to define in the early stages.

Stay strong, Jayne

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Having lived with and cared for CBD sufferer for 7 years my strong advice to you is get a second opinion. See a different neurologist.

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Hi hellebore: Thanks for the advice I will try and see another neurologist. Les.

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