I haven't had a diagnosis of CBD and atm my official diagnosis is YOPD atm I see the Movement Specialist Clinic on the 4th of October was referred to the clinic due to my age (was diagnosed at age 35 now 37 nearly 38.) and am worried that my diagnosis will be changed due to new symptoms.
Atm it seems like it progressed from my right hand to right foot to my left arm... Since July my left arm has felt really week and I struggle with mundane tasks like wiping my bum... Also my left arm really shakes badly when the meds are not at work which isn't stereotypical of PD? (Well according to my PD nurse.)
I am on 4 x 100mg Stalevo taken 1 every 4 hrs... When my tablet kicks in can take 15mins to 60mins then I feel 80/90% can do normal stufflasts for about 2/3 hrs which is fantasticthen I have downtime till my meds kick in again... When I feel like this I have a lie down till I feel better.
It's only affected my movement had no falls can eat ok etc...
Does PD progress this quickly?
Does/can CBD affect 1 limb at a time?
Just so unsure atm and depressed just can't concentrate on anything.
Just needed to vent a little really cheers for listening.
Trev
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stanny7
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Big Hi ! from NY Trev ! Unfortunately my knowledge of CBD is very limited to what I've gleaned from people who've posted on this site about their loved ones with CBD. Because of my sister's dx I've had to become PSP literate ! But what you're describing just doesn't sound similar to what they've described. Hopefully a CBD authority here will be able to offer some info that's a whole lot more knowledgeable! A friend has PD though, and I'm very aware that if he doesn't take his meds on time, his PD symptoms worsen VERY quickly. These include his fatigue, strength, balance, speech, muscle spasms, etc...He carries his meds with him and has his alarm set on his iPhone to sound off when he's due to take whatever meds are scheduled to be taken next. Since his PD presented very severely when he was in his 50's he had DBS generators placed, aporoximately 10+ years ago and they gave him back his ability to function independently, though his PD still of course progresses. Hope that you can find doctors who can figure out exactly what you're dealing with and how to treat it effectively !
Hey Trev. I hope you get satisfactory information when you have your appointment, but in the meantime I would take heart. That the medicine works for you is unlike any story of CBD I have read. You are awfully young to be dealing with this. Whatever you learn, please feel free to vent here any time. Peace, ec
Hi, I was diagnosed with CBD 3 years ago, Everything is in my left side only - atm. My experience has been like this. When I first started on my meds 3 years ago, it took sometime for my symptoms to be controlled. I quickly learnt that taking meds at EXACTLY the same time daily makes the world of difference. I am part of a research programme for PD/CBD, I have noticed my mobility has changed because of gait issues. I have walked predominantly on the left outer edge of my foot. This has caused huge problems, basically knocking my hip and knee out of alignment, causing trapped nerve and intense pain. I am due to get an ankle splint to hopefully help correct this.
All my symptoms are exclusively on the left side, I can still function "normally" albeit slower and in my own time. I have been told by the doctor on the research that I am "very mild" but it was acknowledged that for me it seems worse.
Feel free to ask me any questions about CBD - I have become an armchair expert !
Hi Trev, Welcome to this site. Sorry you have to be here and hope you can get some answers.
There are a number of brain diseases that relate to Parkinsonism. I guess your YO relates to Young Onset.
My husband had what we believe was CBD after clinical diagnosis 3 months before he died. It made more sense than the diagnosis od Parkinsons. I had researched his symptoms and wondered about MSA, which was dismissed by neurologist.
My husband to slow down 4-5 years before his death. He also had heart problems and high blood pressure which may have masked other symptoms. When his body began to be noticeably affected, it was generally down the one side only. He did not lift his left foot and scuffed occasionally. This lasted about 2 years and gradually worsened until it was very obvious. Then his left side was involved. He had Lower back problems 2-3 yrs before his death. This manifested itself after a couple of holidays when he tried to be a gentleman and lift our cases. His back was a constant problem for about a year and he remained weaker on that same side. While visiting relatives, one of them, a nurse, suggested he might have Parkinsons and asked what his writing was like. He rarely wrote so that was difficult to determine, but I look back and can see it was decreasing in size. He had a Pacemaker fitted a year later which gave him some increase in energy for a while. Another year on, we were at the beach and he had difficulty getting out of the water: a day later he walked with a list to the weaker side and was apparently unaware of it. A day later he had straightened up.
Over the next 12 months there was an obvious decline in cogitive ability along with considerably more physical weakness, the last being inability to sit unaided. There may have been problems with both his eyes and ears. He had been deaf for about 10 years but now said his hearing aids were not working. Thaat was checked out and there was a buildup of skin in the ear. We did not have an opportunity to check the eyes. He also developed what I called psoriasis, since the prescribed cream helped. The specialist called it ictheosis.
Your symptoms seem more variable - but CBD seems to be different for everyone.
I would suggest you go back to your neurologist and ask for more tests and x-rays, or a referral to another neurologist. I am so sorry you are faced with this so early in life.
I seem to remember there is someone else on this site who has similar symptoms and diagnosis at a similar age. Think she lives in Australia.
Sincerely hope that you can find some answers, here and/or from other specialists. Keep fighting for that answer, and find a group of friends and relatives who will support you on your difficult journey.
Hi Trev, does not sound like CBD that usually starts with falls, you also sound too young! You have enough problems and you ceartainly don’t need CBD as there is no known cure for CBD.
I wish you well and that your doctors find some help for you to have some relief.
Hi all I seen my Neuro on the 4th and he didn't pickup on anything I explained my left arm was feeling a bit slow down but when he done his tests (eye movement,walking,balance,finger tapping) and he only noticed that my right side is effected but my medication was working.
Still feel really bad when the meds wear off left arm shaky as hell and feels weak.
Went to the docs this morning and she seems to think it's my PD.
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