DX'd with Parkinsonism


#1

Hi all I am a 36 year old man recently got DX'd with Parkinsonism after an abnormal DAT scan... After asking will it kill me she said no she mentioned about meds madopar 12.5/50 2 x a day and even mentioned about the possibility of being able to get back into work and mentioned a blood test to see if its genetic

Me being me I got home and googled Parkinsonism and found this on this very website.

What are the different forms of parkinsonism?
Most people with a form of parkinsonism have idiopathic Parkinson’s disease, also known as Parkinson’s.
Idiopathic means that the cause is unknown.

Ofc they are other forms of parkinsonism which I hope I don't have.

Is it normal to be DX'd with parkinsonism first?

And I have noticed a very slight improvement with the Madopar... How long does the meds normally take to work?

And do I have a better chance on it being Parkinsons due to age?

Thats all I'd like know for now.

Thanks for reading. 

Trev.

 

 

 


#2

 

Hi trev

the parkinsonism is a umbrella term, i like you would be considered to be 'young or early onset' with idiopathic parkinsons. myself i have no others in the family who do, and personally i think it got it from the chemical environment that i worked in, not that it really matters now. For me anyway.

the 12.5/50 or 62.5 as they say is a gentle starting dose, it is good that you have found a slight improvement,not only for your health but too also back up the diagnosis, it may be increased  in a daily amount little at at a time over time with monitoring to best suit how you are now and to maintain that.


#3

 

If you mean how long does the madopar take by dose 20 -40 mins first thing in the morning i feel effect and lasts for about 4 hrs (depending on what im doing) and then i start too feel off, i take  4x 62.5 3 times a day then 1 x3 62.5 in the evening with a slow release over night.


if you drive you'll need to inform both dvla and your car insurance if no one told you that?.


#4

Hi thanks for the reply.

Is there any reason why she told me it was parkinsonism instead of parkinsons/yopd?

I mean how long before you see a bigger improvement? I have only been on the meds 5 days.

I don't drive.

 


#5

 


You'll have to ask her why she said 'parkinsonism' ??

but your improvement with  treatment supports your diagnosis with the dat scan commin back as abnormal that your on the right track, not everyone gets a dat scan.

you should see further improvement as the dose is built up over say  6 - 8 weeks a bit at a time to suit you personally. 5 days is early days.

 


#6

Thanks.

That's what is bothering me which has me wondering anyone else been dx'd with parkinsonism first?

Tried ringing my nuero but no luck.


#7

 

I never get hold of my neuro either, but i do have a parkinsons nurse which you can be reffered to if there's one in your area?, or the help line, or others will answer any questions as best as we can here.


#8

Is it normal for my right foot/leg to have only little function and feel weak in PD/Yopd?

Also the meds dont seem to be working today feels like I have to drag my right leg.

Trev


#9

 


During investigation/diagnosis the Neuro noted that i had muscle weakness/ numbness/ less sensation in my legs, its never been investigated and he didn't really associate it with parkinsons at time (it may be a separate problem) although fatigue which i also have is normal. Our PD is unique to each of us, your movement/gait may well be trevor after all PD is partly about movement or the lack of it or slowness of it or labouring(stiffness) of it.

There are good days and not so good days( you can never predict which is going to be which or i cant anyway) it is hard not too analyse every single moment of the day,its early on you've started on a low dose the brain takes it in gives it a kick start and slowly adapts too it, the stimulation your brain and body will eventually ask for more, so you'll require more so better days become the Norm.


#10

Hi,

My right leg feels unresponsive and heavy feels like a lead weight, same with my right arm, and I am unable to open my right hand... So this can all be associated with YOPD?

My meds haven't really made a whole lot of difference to the above symptoms.

Trev


#11

 

thats where you'll have to go back to your neuro/nurse trev for advice or  call the help line i haven't experienced those in that way you describe, there may be other specific  meds/treatment for that other than madopar.

​what symptoms has madopar helped you with?.
 


#12

Hi the symptoms they have noticed/helped me with is lifting my leg in and out of bed with ease and being able to twirl my foot around... My arm it feels easier to lift but still can't fully extend it... My hand hasn't improved.


#13

I have always been able to speak to the consultant's secretary (and found them very helpful) and leave a message or question to be answered by the neurologist. Contact via specialist nurse is the other route. If you've been recently diagnosed you should get your questions answered pronto, as frequently a number of questions come up after your visit , when it has all sunk in. Diagnosis is often revised after a few more visits, as the disease progresses the picture becomes clearer, of course..


#14

Thanks for the replys.

I felt a huge improvement on the meds Thurs/Friday but they seem to have little to no effect now.

Is they anything but madopar tablet wise or if these continue to not work = bad news?

I just feel so exhausted but I guess that's down to the bomb shell that was dropped on me/and I am not eating well because I felt ok before the diagnosis.

My neuro is on holiday and I am waiting for a referral letter to see the PD nurse but I spoke to the helpline nurse from this website and she said that it could take weeks till i see an improvement and may have to increase my dosage I am currently on 2 x 50mg a day changing to 3 x 50mg a day next Friday

Trev.


#15

 

there are other tablets sinemet is another one which is also levodopa, they are both gold standard treatments trevor and there also others for other aspects of Parkinsons that others are taking you'll see them in the forum, but as the lady on the help line said and she is right, your on 2 tabs a day I am on 15 of those a day, its a starting dose, your initial dose kick started what we all lack in our brains, a initial improvement, your dose needs monitoring and altering, until its just right for you and its optimum effect, the same with other meds that may be added, All of this takes time, for you, for me , for all of us.


When you see your PD nurse you'll prob notice that she has considerably more time than the Neuro with you and your concerns that you may have the back bone of our care , take time to jot things down that you notice such as you have here before an appointment.


#16

http://postimg.org/image/duoopjerp/

This is what my hand looks like and I can't straighten it I've read dystonia is very common in YOPD.

I've got it slightly in my right foot.

Anyone else had this issue?


#17

I first saw Neuro on 21/12/15 and was told I had symptoms of Parkinsonism.  I was referred for brain MRI, Datscan and blood tests to rule out secondary causes of symptoms. At Neuro appointment on 22/02/16 I was told MRI and blood tests came back "normal" but DATscan showed reduced uptake on the left side, which would account for my symptoms of stiffness and resting tremor on my right hand side. Neuro confirmed Idiopathic Parkinson's. I haven't started on any medication yet as my symptoms are not generally too bad to cope with.

Hope this helps. 


#18

I strongly suggest that you look up the publications, free to download from this site..PD UK have won prizes for the clarity of their information sheets and booklets.  If you ring up the helpline they can arrange to send you paper versions if this is easier for you.  I am not medically qualified in any way but, here is some info.to be going on with.
Parkinsonism is just a description of a set of symptoms.  The response to the sinemet confirms that the symptoms are caused by shortage of dopamine.  The lowest therapeutic dose of Sinemet/Madopar (carbidopa/levodopa) which supplies the missing dopamine is more like 3 x 25/100 mg tabs daily so it is not surprising that you are not noticing much change but as you are probably YOPD your neuro may be thinking to putting you on another class of drug called dopamine agonist which mimic the act ion of dopamine.  Its best to be with a movement disorder specialist if you do have Parkinson s


#19

one thing to consider too is the timing of your doses , try to take them evenly spaced  everyday. Keep a diary.


#20

Hi all thanks for the replies.

Noticed I can't flex my toes outwards, guessing this is all down to muscle rigidity?

Am noticing these things more now since my DX.

Trev.