Confused


#1

Hi 

I was initially diagnosed with parkinsons plus syndrome but have recently had the diagnosis changed to a gene variant form of parkinsons after visiting the national institute of neurology in london . I have also had the tests for dbs which I am a candidate for . I wondered if anyone else out there has a genetic form of parkinsons and whether you could let me know what medication you are taking . I am supposed to take stalevo three times a day but it is having  negative effect on my mood and I end up just taking the madopar dispersible tablets my pd nurse prescribed . I also take citalopram and clonazepam at nighttime . Not sure how to proceed and would be grateful for any comments . I am also concerned that i turned down the dbs for now as i feel it is too early for me and find the thought of the operation quite frightening . Think my neuro is going to be angry i didnt go for  it . Has anyone else turned down  the dbs and is it personal choice ? Would me so nice to hear from someone with the same situation with medication or dbs . !!! Thanks 


#2

HI Bernie

Sorry no one has come back to you yet. There are certainly others on the forum who have had DBS and can talk to you about it. You can also try doing a search on this forum for previous posts. 

On your medication, have you tried our confidential helpline? You can speak to a nurse there are 0808 800 0303. 

I hope this helps. 

Ezinda


#3

Hi Ezinda,

Thanks for your reply - I will certainly try looking at the forum for some answers regarding dbs. I am seeing my neurology nurse practioner next wednesday to discuss meds . I'm pretty certain I shouldnt just come off the stalevo I am taking but they seem to be causing more problems than good effects. I have been off them for over a week - except madopar dispersible which I find helpful as well as the citalopram and clonazepam .

Thanks for taking the time to reply :)


#4

Hi Bernie

You really need to speak to a healthcare professional before stopping your medication. Please do give our nurses a ring  at 0808 800 0303. 

Ezinda