I’m Cindy Nelson, and I live in the US. I was diagnosed with Fibromyalgia 25 years ago, but now believe I was misdiagnosed. Two years ago I developed REM Sleep Behavorial Disorder (RBD). Normally, I probably wouldn’t have thought anything of that, but my Dad had recently died of Parkinson’s with Lewey Body Dementia. He also had RBD. So, I did research on the subject and found that 85% of those with this sleep disorder go on to develop Parkinson Syndromes. Since that time I have seen a Neurologist specializing in movement disorders and discovered I have many of the non-motor symptoms of PD, and some Bradykinesia, but not enough to diagnose PD. So my neurologist ordered a DaTscan which took place Apr 1. The results came back with decreased uptake in the Putamen and Caudate in the left side (asymmetrical) or positive DaTscan. My original neurologist moved on to a better position before my results, so a new General neurologist talked to me about my results. He indicated he was not well versed in the movement area, but reading my DaTscan said that there would be drs that would now diagnose me with PD, but he wouldn’t because of the absence of affected movement and he didn’t believe in the 85% percent with RBD going on to PD Syndromes. It seems he discounted all the other non-motor symptoms as well (sleep apnea, insomnia, daytime sleepiness, fatigue, constipation, sometimes tremor, excessive sweating, muscoskeletal pain, stiffness, Apathy, itching, burning all over, etc). He then referred me to a Brain Institute that also specializes in PD and movement disorders. My grandfather also had PD. I find fatigue and especially Apathy the most challenging to overcome. I find myself in Limbo without diagnoses, and losing hope anyone will ever be able to help me with this. My spidey-sense says, this IS PD (I’m following same pattern as father). And getting worse as years go by. And yet, if or when diagnosed, I’m afraid of beginning drug treatment. But at this point, I’d do almost anything to get rid of the Apathy. Has anyone else experienced this limbo?
Welcome to our forum, @Cindy436. You may have gathered that we are Parkinson’s UK and as such we are focused on supporting those in the UK, where the treatment of Parkinson’s may be different than in the USA. Of course, you’re very welcome here and I hope our members will be along to say hi soon.
You’ve seen what your father went through and feel you are following some of the same patterns. This must feel a bit scary and my heart goes out to you. Unfortunately, it’s sometimes a bit of a journey to get a proper diagnosis, but you can read through this page: Do I have Parkinson's? | Parkinson's UK to see how it resonates.
It sounds as if at this point the specialist isn’t willing to commit to a firm diagnosis and that makes things tough. Don’t give up, keep your doctor informed, and see how things progress. Keep pushing if you feel you’re getting worse. You deserve to be listened to.
While drug treatment isn’t something most people feel comfortable with at first, if the medications help with symptoms they can also offer emotional relief. Some of our members will have been in your position and can relate to the ‘limbo’ you are in now.
In the USA, The Parkinson’s Foundation can also offer more local information and advice and you’ll find them here: https://www.parkinson.org/. Their website is very comprehensive and includes an online community like this one. Their helpline is answered Monday to Friday 9-7 ET 1-800-473-4636.
Wishing you all the best
Janice
Forum Moderation Team
Hello Cindy436 and welcome to the forum
JaniceP has given some excellent advice which I hope you will find helpful and follow-up anything that you feel may help you.
To be honest, I am at a bit of a loss to know how to respond to your post as the UK and USA systems are so different. You also have some experience of Parkinson’s in your family, which I think will give you a different perspective to many newly diagnosed people. I can well understand however, how hard it must be for you to feel you are following the same path as your father but are not able to get a diagnosis from your medical team.
Having said that, although not my personal experience, it is known that some neurologists don’t give the same weight to non motor symptoms seeing it as primarily a motor (movement} disorder. To largely dismiss or ignore non motor symptoms can, I think, make living with Parkinson’s that much harder since it is often these symptoms that are harder to manage and live with. Might it be possible for you to get a second opinion or perhaps a referral to a different neurologist who may take a different view of your non motor symptoms.
You don’t say how old you were when your father was diagnosed so you were perhaps not aware of how long it took for him to get a formal diagnosis, but it can be a slow process. Many of the symptoms of Parkinson’s can also be found in other conditions so it is important that efforts are made to ensure no misdiagnosis is made - and that can take time.
You also mentioned medication which is a big issue in Parkinson’s generally and often occupies the minds of those newly diagnosed. Unfortunately there are few concrete answers as is true of all things Parkinson’s if I am honest. At the end of the day you can only make the decision that is right for you. Generally in the UK medication is only recommended once the presenting systems start to impact on one’s quality of life, and for me that is the key point. Parkinson’s medication is very effective once the right drug and dose has been identified and that can be a bit trial and error - but get it right and one’s quality of life can be improved immeasurably. People also worry about the side effects but most if not all medication has side effects and it doesn’t follow that everyone gets everything and the only way to find out is to give it a go. You may like to read a few more posts in the introductions and personal story category to give you some idea of the sorts of issues that are commonly addressed here on the forum including medication concerns; it may give you some reassurance to find that the advice given by different forum members is surprisingly consistent.
All of the above is something of an irrelevance since you have not yet had a formal diagnosis and if your system allows it, in your shoes I would be looking for a second opinion or for a referral to a different neurologist who accepts that non motor symptoms matter as much as any motor symptoms.
Apathy is arguably one of the hardest symptoms to manage but it strikes me that in posting to the forum you are not beaten yet, since it would have taken effort and energy and possibly a little courage to write and submit your post. I am not sure how much use my reply will be to you but I hope you were able to take at least something positive from it.
Perhaps you will come back with an update at some point, I would be interested to know how you got on in hopefully securing the correct formal diagnosis and whatever it turns out to be, how you are managing.
I send my very best wishes to you.
Tot