Waiting game

Hi everyone
I am new to this forum
I may not have Parkinsons as it appears early days,i am waiting for a Datscan, though i know that still will not be confirmation, so basically i am in limbo,wondering if my left hand/arm is an old tennis elbow or my left foot that feels strange and causes me to trip is all in my head? I have had a stiff painful neck for a year now,but on the right side,and the neurologist says it is usually shoulders that are affected when Parkinsons is involved. He claims that one of the tests shows slowness and maybe balance issues, which i do have now and then. I am a 58 year old married female who feels a bit confused with it all,and a little isolated. I also get bad foot/toe cramps on a regular basis,but lots of pins and needles in my limbs,but i haven’t read of any others getting pins and needles with Parkinson’s, so i am wondering if it is? My mri shows no trapped nerve, so i am wondering if this is really happening.

Hello Flossy
It’s not hard to imagine the mixed emotions you are feeling at the moment whilst waiting for a formal diagnosis. I have no doubt that you probably go from being rational about your situation ie there’s no point worrying until you know what you’re up against to anger, frustration and a hundred and one other emotions that it is taking so long, and underpinning it all I suspect a layer of fear of what it may mean for you if Parkinson’s is confirmed.

In all honesty there is little I can say at the moment that will help much. The process to diagnosis is not necessarily straightforward and takes as long as it takes. There is no definitive test for Parkinsons and some of the symptoms can hold true for other conditions so it can take time.

Although I accept I am asking something very difficult for you to do, if you can do try not to over think it all, or write too much into your various symptoms which may even be exacerbated by the stress you are under. Worrying about a possible diagnosis and what it may mean for you, won’t change the news you are ultimately given.

The other thing to say, and you will have to take this on trust since you are unlikely to believe it at the moment, is that if it is Parkinson’s you will be alright. Maybe not straightaway and maybe it will feel like you’re never going to get there, but you will find a way to live with Parkinsons at your elbow and still have a good life for a long time, many years in a lot of cases. It won’t be the life you saw for yourself, and I can’t deny you will face some challenges and there will be days when you wish you could stop the world anf get off, but that is not the reality and when the time is right for you, when you have found your way of managing it, you will be able to see for yourself that you are alright.

I do hope you don’t have to wait too long to find out what all your symptoms actually add up to. Existing in no man’s land is no fun at all.

My best wishes to you and do let us know how you are getting on.

Thank you very much Tot for your kind reply. I will certainly let you know how things span out eventually. I just feel that i am too young for PD (in my mind i am!) When of course realistically i know i am not.

Welcome Flossy, I was told I had Parkinsonism 02/05/2023 and exactly like you came to the forum so we are definitely not alone waiting for a scan. At 57 I feel just like you but the first thing I found was that many in their 20’s are diagnosed so it’s all relative. I am still reeling but as Tot says realising there’s a good life whatever and medication and guidance that is starting to help me. It’s scary and a lot on your own so like me I’m sure telling people helps in itself, not to find answers but to think through in your own mind what has happened and what you have been carrying for a good while. Really thank you for coming here and reminding me I’m not alone, Mark

Hello Flossy
Like you, I have been waiting for a Datscan since last November. I finally have an appointment for this Friday, 26th May. I must say I am a bit apprehensive, knowing what to expect and experiencing it are two different things.
It will be a long day as I am being picked up by ambulance. I can no longer drive myself and rely on a wheelchair. But, it will be good to finally get some sort of answer.
Being in limbo is not a nice place.
There seems to be plenty of support here so try and keep positive.

Hi kranp1 and janp
I wish you luck with your diagnosis. My understanding of the scan is that it can be positive even when it is negative, so maybe in the early stages the datscan could still be of no help getting nearer to a diagnosis. It is just a case of staying positive, and eventually hoping for an answer to our health issues, i don’t have a tremor only very occasionally, but i have a problem with my left arm/hand and my left foot,tripping up and walking with my foot going in. How do you present with your symptoms may i ask?

I have a wide range of symptoms, restless legs, neuropathy, tiny handwriting, internal tremors but my worst symptom is stiffness and rigidity, slowness and fatigue. The stiffness is painful it wakes me up. I cannot walk very far, have no arm swing and tend to drag my left leg and this has slowly deteriorated over the last few years.
I have been diagnosed with FND but my neuro thinks I may have developed PD, hence the Datscan.
I know everyone’s symptoms can be different and it can be difficult not knowing. I hope you get some answers.

Hi Janp, very similar to you diagnoses FND and previously CFS now PD tremor and rigidity lack of swing left arm dragging left foot and waiting on scan now on sinemet that engenders odd sensation but not perhaps healing so far. Blessings are I drag myself around a local run, cycle and walk. Wish you all the best with scan and any support you can find. I have a clinic follow up 14th and support group so world away from lack of support with FND diagnosis at least, Mark

Thank you Mark.

Thank you Mark. I am still trying to work around this site :confused:

Well, I had my Datscan on Friday but what a long day. I left home at 8am and arrived home at 7pm. The staff were lovely although there was a big hiccup with my transport. It got cancelled the afternoon before I was due to go.
When I got home there was an appointment for me to see my neurologist (should have been March) so I am hoping to have some kind of answer by the end of June.
I am still recovering from the day, I just feel so tired.
At least the sun is shining and I have somewhere to air my feelings.

Hi Jan
Crikey what a long day! I’m not surprised you were tired. Well hopefully you will get some answers soon,did they say how long you would have to wait for the results? Or do you get the results when you see the neurologist?

Hi Flossy, hopefully I will get the results when I see the neurologist.
The info from the scan appointment says results will be sent to your doctor in approximately 3 weeks.

Thanks for writing here Joanne. I’m waiting for sky myself, and it’s good to know what to expect… i’m not saying it was that important because the consultant told me it’s just for my reassurance rather than else having previously been diagnosed with FND. Hope you get the answers quickly and clearly, and kindly passed on to you. Thanks again for the update mark