I’m new so bare with me I was told I have pd and it may be atypical? I haven’t had an mri or a datscan in so confused and scared of what’s going on I’m on 1250mg of madpor daily I don’t know if they are working or not how am I meant to feel? And why haven’t I had the scans yet ?2024-04-19T23:00:00Z
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Good evening Tania & welcome to the forum. You have not given us much information to work on …
But I can assume you saw your GP who thought the symptoms you had looked like Parkinson’s disease so he / she referred you to a Neurologist whose opinion was that you had Atypical Parkinson’s & prescribed Madopar.
There is no blood test or anything known to us that can prove whether we have one of the many Parkinson’s.
Parkinson’s sufferers like me have a lack of dopamine in the brain. I had a Datscan on my brain which was positive [lack of dopamine] so I was told that I had Atypical Parkinson’s like you because of this & the symptoms I had like a slight tremor, gait freezing, a dry mouth, sleep problems & fatigue. I also had a brain mri scan which was normal. They do an mri scan of the brain in order to rule out things like mild strokes.
I was first prescribed Madopar which replaces the lost dopamine. It did not work for me either. I am now on Sinemet which I think helps me.
If you did have a positive Datscan they would prescribe you Madopar. So in a way having these scans doesn’t achieve much. Either way you take Madopar in the first instance.
If the Madopar isn’t working you should tell your Neurologist who will prescribe another drug for you.
There is no cure for Parkinson’s & no test that can prove for certain that you do or do not have Parkinson’s. There is no blood test for example.
Why not give the excellent Parkinson’s nurses here a call on 0808 800 0303 & have a chat with one of them. The call is free.
Any questions please ask.
Best wishes
Steve2
Hi Steve
Yes my gp referred me. I’m just so confused as to what is wrong with me I have had my symptoms for 3 years . I’m so depressed it’s all I ever think about I need answers and I know all this worry is making my symptoms worse
Hi Tania … What symptoms do you have? We all have symptoms & once we get over the initial shock things do feel better.
Do give the helpline here a ring. It is free & I’m sure it will help you.
Best wishes
Steve2
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It started with a tremor 3 years ago but that has now stoped now in very weak can’t even pull myself to sit u in bed I’m constantly tired my eyesight is blurry I can no longer swim I’ve recently been passing out I was put on amantadine but my go said it was that making me pass out my blood pressure is low that makes me dizzy and faking very slow have a little bit of trouble swallowing screaming every night when sleeping and sweating really bad at night I think the Madopar is doing something but not much at all
Hi Tania … Do give the helpline here a ring & talk to them.
Best of luck.
Steve2
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Hi Tania. While you do have some Parkinsonian symptoms it does not sound to me to be typical Idiopathic Parkinson’s Disease. Have you had the appointment with the Neurologist? If so, has the neurologist given you a plan of what will now be happening. A Brain MRI would seem a sensible way to go. Where is the hospital you attend?
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Hi Tania,
madopar should make it easier to move. You may just not be on a big enough dose yet. MRI won’t diagnose PD it’s symptoms, progression and response to treatment that does. If you’re on madopar then you should have seen a neurologist. If there is a PD nurse in their service contact them and talk about your problems. If not contact your consultant’s secretary or talk to your GP. ParkinonsUK also has a helpline.
Hi Tania see your Doctor for general health check bloods ECT.I would checkout alternative therapy like Near infrared therapy which works for some people. Also metabolic therapies seem to improve a lot of symptoms, things like intermittent fasting very powerful and also the keto diet can improve pd symptoms. There are many videos on YouTube about these topics .
Don’t despair but look elsewhere 
I have an appointment for a dat scan ont the 15 August. I’ve Been put on melatonin to help with sleep but it’s making me wake up in the night and fall asleep standing up I did this for 2 hours last night then eventually fell over this is not living I can’t take much note of this
Good afternoon Tania. I am 70 years old & have Atypical Parkinson’s. I have had sleeping problems. Some nights I can’t sleep at all & I have extreme nightmares. It
annoys me like hell that my GP’s will not prescribe sleeping pills. I have tried Melatonin & it is worse than useless.
I have just been put on Quetiapine. It helps control my nightmares & helps me sleep.
Quetiapine is a medicine that helps with mental health conditions such as: schizophrenia, where you may see, hear or feel things that are not there or you believe things that are not true, or you feel unusually suspicious or have muddled thoughts.
Best of luck.
Steve2
Hi Steve how long have u been diagnosed I’m 54 they think mine is psp
Hi Tania … I was diagnosed in June last year following a positive Datscan.
So many of the pills I take cause sleep issues as a side effect.
Steve2
What otter sleep problems do u have so far I have stiffness to the point I can’t turn over in bed also waking every house ti use the toilet and screaming in my sleep
The nightmares can be very extreme. Some night’s I need to pee a lot. I can also have an urge to pee but can’t. I often wreck my bed, duvet on the floor & under sheet all rutted up. I think I also try to break my fingers while I sleep.
Thin new pill has made a difference. Last night I had 11 hours sleep.
Steve2
Hi Tania. Have you had the result of your DatScan yet?
If you are still having problems with screaming and moving during REM sleep you may find that a drug called clonazepam helps. It completely gets rid of my REM Sleep Behaviour Disorder symptoms.
Doug
I did have results he said we are going in the right direction whatever that means but can’t tell if it’s a-typical still . Will I ever know? I’m having really bad rls in the nights so only getting 2 hours sleep