Could the side effects of Neurofibromatosis type 2 [NF2] be mistaken for Parkinson's Disease?

[Adlon57]

Having NF2 with shaking hands, unsteady gait, small term memory loss, etc, be mistaken for the similar effects of Parkinson's Disease? Would they be related in some way?

[Beckie_Port Parkinsons UK]

Hi Adlon57, some of these symptoms do sound similar but there are a number of tests that could confirm a diagnosis of neurofibromatosis type 2. There is no evidence of a link between these two conditions and a specialist would be able to tell the difference.

Parkinson's is caused by the loss of a type of brain cell that produces the chemical dopamine rather than the presence of tumours. Whilst there is no definitive diagnostic test for Parkinson's, a specialist can diagnose Parkinson's by investigating a person’s symptoms. They may test if a person responds to Parkinson's medication to help confirm diagnosis, this medication would not improve symptoms caused by neurofibromatosis type 2. You can find out more about Parkinson's on our website parkinsons.org.uk/content/a..., or learn about how Parkinson's is diagnosed with this resource parkinsons.org.uk/content/d...

Or to find out more about neurofibromatosis you can visit The Neuro Foundation website at nfauk.org/

If you have any worries, we recommend speaking to your GP or specialist.

With very best wishes,

Beckie

The Parkinson's UK Research Team

[Adlon57 in reply to Beckie_Port]

Hi Beckie_Port I have just seen my GP today, he agreed my Parkinson's was rather unusual, in that I had had a DAT scan, and was told I had Parkinson's 'symptoms'? What they did not bring to my GP's and myself's attention, was my 'shakes' could have been due my Epilepsy medication, I suggested to my GP, and he agreed, that I lower my epilepsy medication, slowly, my seizures anyway have been very minimal in the last couple of years.

all the best

Shaun

[Adlon57]

I have Parkinson's Disease type effects, loss of memory, unsteady gait, tremor in the hands, loss of concentration, but which after a DAT only confirmed I had Parkinson's Disease like symptoms, they did not enlarge on that!

I also have epilepsy, which I have had for over forty years, this particular type have side effects from this medication, "problems with balance and co-ordination, feeling lethargic or less alert" "feeling shaky(tremor), sleepy or unsteady when walking or jerky muscle movements" this particular epilepsy medicine type I started about the time I started 'the tremors' which could imply it could be this, rather than I actually have Parkinson's Disease. My symptoms were beginning to become rather dramatic, 'could not write, dropping cups, etc' so that is why I was tested for Parkinson's Disease via DAT scan.

There could be some difficulty defining whether it was the Epilepsy medication [or indeed the epilepsy itself] that caused the 'Parkinson's disease', or I actually do have Parkinson's Disease? Either way, due to my lack of epileptic fits, two since December 2013, my Epilepsy medication, has been lowered, slightly, which should, in theory, go to some way prove the case, one or other? [Parkinson's Disease or Epilepsy or Epileptic medication, even a combination?]

[My Epilepsy consultant retired in December 2013, which meant my Epilepsy medication level has not been altered since then]

ps. just to confuse the matter I also have Neurofibromatosis type two [NF2] which could also mean neuroma's etc?

[Adlon57 in reply to Adlon57]

Just a wee 7 year update for you Adlon🙄 shaking hands were caused by long term use of Epilim, been tested twice for Parkinson's disease, negative, [my father had PD], no you don't have neurofibromatosis NF2, you have the much rarer type NF3 Schwannomatosis, March 2017, your own specialist, they are called schwannomas, silly boy you should not have started Fycompa epilepsy medication [life-changing], I still have shaky hands but that was mainly caused by reaction to Astra Zeneca vaccine in 2020. 🥴🙄