Hi guys, my second time on here. I started Madopar 3 weeks ago but a small dose titrating up and so no impact as yet. I also have a DaT scan booked for early December.
However I had an appointment with my neurologist yesterday and he now thinks I have FND. I have looked into this and the symptoms are very similar to parkinsons. I have also heard that a DaT scan doesn’t always show anything for people with parkinsons so i am feeling even more confused and the black hole of uncertainty has just got deeper…
I am currently signed off work till early January as I am struggling to function with all my symptoms.
Anyone else had a confusion over diagnosis?
Good afternoon Clay … Don’t be confused. You have a DATscan booked for 4 weeks time. After this you will know if you have one of the many forms of Parkinson’s.
Take one step at a time. There is no point in worrying. Worrying makes things worse.
FND cannot be treated so it is not as if you are missing out on early treatment. I think they suggest physiotherapy / mild exercise which you could start now if you wanted to. Also take this as a nudge to get yourself eating more healthily & being as fit as you can be. I had a positive DATscan about 6 months ago & my Neurologist thinks / has guessed that I have Atypical Parkinson’s. This diagnosis cannot be proved. I was on Madopar & Ropinirole. I tried both & neither did anything for me. Both have been stopped & I am on no Parkinson’s medication.
Do let us know the results of your DATscan.
Best of luck.
Steve
Hello all…
Any thoughts? My DAT scan came back as nomal and so my neurologist says I don’t have parkinsons but FND. I am very confused as parkinsons medication is helping with my symptoms, i feel almost normal again…
Hello Clay … Good news that you don’t have Parkinson’s. I have no idea why the medication is helping you, placebo effect maybe?. Be grateful it does help.
You might get a second opinion on the Datscan?
Best of luck.
Steve2
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why do you say FND can’t be treated? if you said there are no reliable treatments for FND that work for everyone, i would believe that, but i find it hard to believe that absolutely zero cases of FND can be treated.
best wishes,
joe
Sorry parkieJoe … you are of course correct.
Happy Xmas
Steve2
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@Clay A DatScan can confirm PD but having a normal DatScan does not necessarily mean that you do not have PD. My first DatScan, about 12 years ago, was reported as negative!!
Thank you Douglas.
Yes I am awaiting a second opinion, due to see a movement specialist in May.
I have researched FND and people seem to have good/bad days and ‘triggers’ for thier symptoms. My symptoms remain the same day to day…
Will have to wait and see.
Clay
Hello…
It’s been a whils since I posted.
I was meant to get a second neurologist opinion in May to see if I have PD or not. Sadly, this was cancelled as the new consultant was off sick. My wife and I were so frustrated as we’ve been waiting for an answer for a year now. I now have an appointment in mid July…
Since Jan I have had to quit work as they were not able to make the reasonable adjustments required.
I am looking for something that’s less demanding but keeps some money trickling in to pay the bills, while we wait for an answer.
Sadly, it feels like life has been on hold for just over a year while we wait.
I tick some boxes for PD but not others, hence the confusion added to the fact of a negative DAT scan, yet some symptoms are being helped with Madopar.
It’s like my joints get stuck/frozen and then thaw out when I get moving…
Sorry for the rant, just frustrated and tired.
Hope your next appointment happens and that you get the diagnosis sorted out. Take care. Doug