A little over 3 years ago I started smelling unusual burning as though someone was smoking next to me. A few months went by and I started suffering with fatigue and severe aching and eventually had to give up my kickboxing. I was also told I had carpal tunnel and tennis elbow. Now I have all the typical symptoms of PD, rigidity seems to be the worst where i struggle turning in bed and I’m so stiff when trying to walk, with no arm swing. My left side being the worst affected. My doctor sent me for an mri and results showed i had a small lesion symbolic of a silent stroke in the midbrain. When I saw the neurologist he was unsure how a small lesion on my midbrain would have caused my symptoms, so he repeated the scan himself due to cogwheel rigidity and olfactory hallucinations and also sent me for a datscan. I have an appointment with the neurologist on Nov 6th to discuss my results. I am concerned because my dr tells me my datscan was normal. I still have the small lesion on my midbrain and no further lesions are present, so this rules out MS which I knew. I am only 39 and worried I have YOPD but my GP thinks its ME. I’m so confused and worried at the same time. I like everyone here doesnt want PD but I’ve suffered with all the non motor symptoms for years; constipation, excessive sweating, depression, anxiety and sleep disturbances such as nightmares and acting out in my sleep. My wife says not to worry until I’m diagnosed but after 3 and a half years I just want some answers and to not be fobbed off with it could be this or it could be that.
I’m sure most PD sufferers have played the waiting game, we have all been symptomatic for many months, years before diagnosis.
Personally I was relieved to get my diagnosis, I knew I wasn’t insane! Not the club I wanted to be part of but it is what it is.
I know it is easier said than done as well.
I wish you well at your appointment and you get the answers you need, if not keep pushing.
Let us know how it goes and remember there are loads of people on this forum ready to listen.
@CH in my opinion you are in the place we all dreaded what is wrong with me! I know how you feel as I similarly went through the process of not knowing and being told it could be this or could be that for about 3 - 4 years. I recall the initial letter from the neurologist said shows little signs of PD though has several non motor symptoms and symptoms which may be due to a historical back injury. I had to wait + 3months for a day scan and the results changed his mind. Now I know your GP has said it’s normal and hence your worries and concerns. But listen to your wife and wait until the 6th. Once you know what it is you can both deal with it and start to get on with things. Good luck for the 6th and if it’s PD you will find us a likeable bunch on here ready to support you and your family. 3 years since positive dx of PD @ 11.21 on 12 December, my life has changed but I am still me and I have a very supportive wife and grown up children and a smaller but I’m better off for it supportive friends.
If you want please let us know how you get on
@CH, Hi and welcome to the forum. You made mention of sensing someone was next to you smoking, is there someone in your family who has passed on who used to smoke ?? It could be their spirit visiting you to give a warning or purely to let you know they are there, it is usually the former to let you know that something is about to happen in your life. I have had these visitations on many occasions and just by the smell of the tobacco I can usually tell who it is, mostly it is my Dad, he used to smoke a pipe in later life and the tobacco he used had a very distinct smell !! Think about it.
This aside, anything can trigger PD, with me I had a groin Hernia operation, before I went into hospital I was fine and normal but when I came out it was like a light switch had been flipped and this was the start of my PD journey albeit I wasn’t diagnosed until I was 58 so not so young !! LOL My walking was noticeably different, I was throwing my leg out, even now I mostly shuffle around the house but try not to when i’m out. I have balance and memory issues as well as having a second tremor of Dystonic nature. I have a DBS fitted and this helps with controlling my PD but not the other tremor, this is being looked into as we speak. Hopefully your Neurologist will give you answers so that you know which direction you are going. In the meantime, try not to worry and think of happy things and try to live your life as normally as possible. Please come back on here to let us know how you got on and maybe we can help you with whatever it is to help you move on with your life. On this forum you are never alone, we are all fighting the same cause and will be here for you whenever you need us.
Had my results today. I’m told I have an 8mm scar on the thalamus in the right mid brain which is causing all the motor symptoms on my left side. Apparently I’m unlucky enough that its hit exactly the right spot to mess me up. I’m thankful I dont have PD but the neurologist says there is nothing I can do or take for the symptoms I’m suffering with, but deal with them the best way I can. I wish everyone here well for the future!
So glad to hear it is not PD and I hope you remain well.