Hello. Have to be honest, it’s taken me a while to find the courage to post but after today I desperately need advice.
A year ago I started with pains. In chest and shoulder, treated for rib subluxation, sent to physio who when he saw my slight tremor referred me to spinal department, all they could find was some age related issues (I’m 49 today) From there I was referred to thyroid clinic as they found incidentally masses in my thyroid on spinal mri, which proved to be goiter. Tremor got worse and numbness in right side, October I had a second mri this time on head as doctor thought maybe a small stroke or tumour, that again clear. Saw neurologist December 20th and she did physical exam and told me she was sure I had Parkinson’s and put me on madopar which has really helped with the tremors and pains.
Had a Datscan last Tuesday and today received a letter from the consultant saying that the scan is within normal range, however it’s noted the z score is minus 1 and lower than expected for age. ‘This may or may not be abnormal as normal values cover a wide range’ she wants to repeat the scan in two years. It goes on to say If we consider that the scan is within normal limits she’d like me to stop taking sertraline ( been on over 10years) as it could be in sensitive to certain medications and sertraline can cause side effects of Parkinsonism in some patients. She suggests I change it or ideally avoid any anti depressants to see if symptoms get better.
So now I’m completely confused, I’ve rang the secretary to see if I’m supposed to stop the madopar as that’s not mentioned and if this is saying I don’t have Parkinson’s. Even the secretary said it wasn’t clear but will get back to me by Friday.
I’ve searched good old google for what does z score minus 1 mean with no results
The madopar has definitely helped but this is making me very anxious ( sure you can tell from my rambling post) any advice ?
Hi and welcome to the forum, @Ezzy. This is a friendly and supportive place and I hope our members will be along soon to say hello and weigh in on this.
I can totally understand how confusing this must be. You’ve definitely done the right thing in asking for a call back so that you can ask your questions and get answers that will help clarify the situation. There’d be nothing wrong in making another quick phone call specifically to ask for advice about continuing the Madopar. You now know that some medications can cause Parkinson’s symptoms and that for most people once the medication is stopped, the symptoms start to go away. This article might be useful: Types of Parkinsonism | Parkinson's UK.
Friday probably feels a long way away but I do hope you feel reassured after the call and that you’ll let us know what you find out.
Friday is a long time to wait. I’m responding not because I have answers - I don’t. I wanted you to know people care and are thinking of you. I hope it gets here sooner…
Thank you both. I have to admit I’m a bit of a control freak, really hate being in no man’s land. I’m scared that if they stop the madopar I will be back to square one, of course I’m more than willing to stop the sertraline if that’s causing symptoms but my gps have no appointments either telephone or in person for 6 weeks and said change of meds is not classed as a emergency so won’t even ask the doctor to look at it. After a year of this I feel very fed up, I’ve seen so many doctors and had so many tests, at no point has anyone questioned the sertraline. I’m now wondering if I’m losing my mind, if this is all imagined. I couldn’t be more different to 12/13 mths ago if I tried. I guess all I can do is wait … maybe there is no answer.
Just a late afternoon update, the hospital have called and direction from the consultant is that I am to continue with the medication madopar and will be seen in clinic in 6mths. X
I don’t think a normal DAT scan completely rules out Parkinson’s. The fact that you respond to the meds makes it more likely that you have it. Unfortunately Parkinons is an illness where certainty around the diagnosis comes over years sometimes. If the madopar makes you feel better then I’d take that as a win. I’m glad you heard from your doctor uncertainty is difficult. I hope the message from the hospital makes you feel less anxious. There’s lots of information on the ParkinsonsUK website and you can always ask questions here.
Hello Ezzy
The reason for your post, if I am understanding it correctly, has largely been sorted which is good but you have clearly been through the mill and no-one could blame you for feeling fed up. I hope you are feeling a little reassured at least now.
I just wanted to stop by re your remark about being a ‘control freak’ hate being in no man’s land and you feel like you are losing your mind. Parkinson’s is a most peculiar condition and I suspect a great many people on the forum will be able to empathise with your comments. They may not describe themselves as control freaks but it can feel like you have no voice in what happens to you and everyone else makes the decisions for you. Equally many will have floundered in some sort of no man’s land or its equivalent, sometimes for a substantial period of time and there is no doubt when you are given conflicting advice or it seems none of the professionals can agree, it can moat certainly feel like you are losing your mind. Your reaction and interpretation of what you have been through sound entirely rational and ‘normal’ to me. I tend to view Parkinson’s as something of an inexact science. It carries a number of symptoms but their impact can and frequently is very individual. So I listen to the professionals who know about the condition and have experience gained in some cases over many years but they don’t have it. I am the one living with it and I know me and the impact x, y and z have. The most important thing for me therefore is to make the decisions that feel right to me and for me. There are lots of ways to retain some control over your life, not all big decisions sometimes it may just be a small incidental things. Similarly you may on occasion find yourself thrown back into no man’s land, instead of thrashing about in an effort to free yourself use that time to plan - what questions do you need to ask, who do you need to ask them of, is there anything you can do to help the stalemate move forward, what are the obstacles. it may not always be a bad thing to be stuck in mud, used creatively that time could change your whole mindset and enable you to see your situation in an entirely different way.
I don’t know if this will make much sense to you but hopefully something may strike a chord,
Best wishes
Jan
