Good morning Lynn,
I hope you inspite of your concerns are well & enjoying the bank holiday weekend. The weather is so unsettled!.
I have read your post & do feel for you & understand. It is a concern when your unsure about the future of your health, I guess all you can do is wait & see how things go by taking each day as it comes. It is encouraging news that both scans have shown up clear results. I don't know much about pd still even though I have read a lot & spoken to people about it, all I do know is that some of us experience the same symptoms, some have different ones. Just as some people's pd progresses slower or faster then others.
I saw my consultant 2weeks ago & I was taken aback a bit when he said to me, You seem to be doing well, I may have got it wrong & you may not have pd!!! I was a little surprised when he said that as I thought "i've been on pd medication now over a year, so I hope you haven't got it wrong!!" He went on to say i'm pretty sure you do have it, infact i'm almost certain you do, because your balance has improved along with the other test since being on the medication, so that confirms to me you do have it! He said he thinks i've got Non motor symptoms parkinson's? I must admit I would myself feel a lot happier if I had been offered a Datscan as i've been told that's the only scan that can confirm for sure that you do have it. I'm still 2weeks on surprised that after him saying to me I could be wrong. (these things can happen) but I don't think I am, infact i'm almost certain i'm not I would have thought a Datscan would surely have been offered to me, but it hasn't!!
Ever since i've been dx which was Christmas Eve 2014 i've had people say to me I don't think his dx is correct, but at the same time I do know I certainly do have a lot of health problems. My balance was bad (is better now since taking the pd medication, although some days its still bad. I do have muscle weakness in my arms & hands especially. I get very tired quickly, & recently very breathless too. I have trouble swallowing & a very dry mouth, so much so that my lips dry out, & it wakes me up most nights. I don't sleep well, get very depressed. I get muddled sometimes when talking. I just know my body & mind has changed, so I feel I do have it, but like you its worrying when you have feelings of uncertainty & your Consultant comments that he may have miss dx it! & also in my case a lot of people around me are not being overly helpful or supportive. It makes you think well if its not pd its dam well something as I know my own body & head & something is sure not right.
Yesterday I went into town to do some shopping & my god did I come over bad in M&S at the cash out, I had to ask for help & just get a taxi home. When I came in I just threw the shopping down, got some water & had to lay down on the bed The pain in my head was awful, I was so cold, felt so weak & just felt I couldn't do anything or cope with the day. I often get these days. & often after eating feel really ill, I feel like i'm drifting into an almost coma like sleep, & am so nausea & weak. Again it take me off my feet for a while. So i'm a bit like you Lynn, I know something is wrong, & I do think I do have pd, because of all my symptoms, but I also worry about it & do wonder why i've not been offered a Datscan. So many people on here seem to have.
You may have the very early signs of it,& its not showing up yet on the scans. I would wait until July, it may seem a long time to wait but it will soon come around. Once you see the Consultant or Dr again see how you feel then and hear what they say. Things may be a lot clearer by then.
I was told that pd can be a part of you for a long time before it actually starts to really affect you, the symptoms are so small & make little difference that you just don't notice it or go to a gp, or you do as I did but they don't automatically think of pd, they do other test for other things. Its only once the pd has reached a certain stage that it's possible for the medical profession to be clear to dx it. When I first became really unwell it was about 5years ago, & I lost a stone in 4weeks, for no apparent reason. I was also very weak with constant nausea & had bowel changes & trouble digesting food. I had months of test, but I was told they were concerned it was some form of Cancer. It was only when I saw my gp one day & fell in her surgery & was very confused that she made an appointment for me to see a Neuro Consultant, I waited 6months for that, & I guess I was with him 25 30 mins at most & he dx straight away there & then pd & put me straight on medication.
Since then i've had to see chiropractors for bad back pain etc, & they have all said they don't think I have pd??. (they mean well, but none are prepared to support their remarks or concerns & write to my gp, it just unsettles me, which like you, you don't need.
I hope my ranting on has helped you a little Lynn. There are people on here who know far more then I do & i'm sure can advise you better. I would just say don't worry, (easier said I know)! Try not to get too stressed as that makes the, or any condition worse. & just wait for your next appointment.
My Consultant told me that there is a very thin line between pd & some other illness's so I guess it is hard for them to dx unless you are showing lots of the symptoms, which you obviously aren't. I think if it was me though i'd be very encouraged by them scan results you have had.
Take care Lynn, try to have a good relaxing Sunday. Say's she stressed out & so not in a good place at the moment. This site & the people on it are so friendly, understanding & helpful. I often think of things they have written or said to me & it helps me through days like i'm having lately.