Very new to the forum


#1

Hello everyone,

I was originally diagnosed 3 years ago but rightly or wrongly I decided to soldier on without medication.  I went to see another neurologist, who was brilliant, and he advised that it was time to start on Sinemet. half a tablet three times a day for the first week then one tablet three times a day (125 mgs).  This is my current dose, although he advised to go on to one and a half tablets if things don't improve.

I have noticed a significant difference in my arms and upper body but my legs have become so much worse. They feel cold, achy and so heavy that I can hardly walk around the house and now need help to turn around has anyone else experienced this. I really need some advice.

 


#2

Hello AngelaR

I get quite a lot of pain in my legs: it feels like I have done too much exercise the day before.  Somedays I can get moving and it wears off, others I have to take painkillers before I can move much at all.  The Parkinson's nurse thought it was due to insufficient medication and increased the sinemet dosage I take first thing in the morning.   

Have you a Parkinson's nurse in your area? She could possibly help.

AnneG

 


#3

Hi AngelaR

I started my Sinemt plus tablets taking 1/2 tablet twice daily for 5 days then 1/2 tablet three times per day for five days building up to 1 full tablet 3 x per day. Unfortunately apart from nausea i had other major side affects and have come off them altogether. I will wait to see the Specialist to see where we go from here.

 

AllanY


#4

This is marvellous - thank you both for bothering to answer.  Yes, I do have a specialist nurse who is wonderful and she has advised that I need urgent physiotherapy.  This medication is not straight forward and needs careful monitoring.  My legs are a little better, thank goodness,therefore I can do a little more which is helping. I am so sorry AllanY that your medication caused problems - let me know how you get on.


#5

re trouble moving heavy legs- 

I have found visualisation techniques helpful. Eg instead of thinking of lifting the leg, imagine it is being pushed up from underneath, by a jet of water or a piston. Or, go through the movement in your mind, for instance visualising the line your foot will make as it moves, then switch off the conscious effort and allow your leg/foot to 'just do it'. Sometimes you may find that you cant move your leg because you still have your weight on it. With PD, weight shifting may not be automatically precede the movement, ask yourself if your weight is still on that leg before trying to move it. Tai chi can help with this. Turning- PD patients are slow to turn our feet, which can lead to balance issues. Remind yourself to turn your feet first. Physio exercises and tai chi can be very helpful here.

Try thinking of moving as an art form rather than a way of getting from A to B- it can take some of the stress out of it and reduce the chance of seizing up!


#6

Hi Everyone

At the moment I am at my wits end trying to figure out what is going on with this dreadful disease.  I was diagnosed in 2010 but, apart from the obvious, don't know to what extent symptoms vary.  Would everyone lists their symptoms, no matter how slight, so I can gain some insight into what is happening with my body. I am sure you know how thankful I am. I am putting this message on facebook as I am desperate for as much feedback as possible.  I am now housebound.


#7

Hi AngelaR.....i am sorry to hear that you are having such an awful time with the dreaded "Parky" i was diagnosed in Feb 2013 though it appears i have had it for several years prior to that. my symptoms started with a frozen shoulder that despite steroid injections did not get better and eventually had an MUA which sorted it out. I lost my sense of smell to a degree and sent back 3 bottles of perfume to various companies as they didn't smell "right". I was shuffling and taking small steps and my legs felt heavy as did the arms, which also felt rigid and my right thumb twitched. The right hand felt odd and didn't have the movement that my left hand has. I was shaky and for a long time thought it was because i needed to eat more (consequently i gained weight)eye rollone of the worst things for me was the years of restless legs.......i couldn't remember having a good nights sleep until i started on the PD meds.....miracle it disappeared and sleep came at last.

Apparently most PD patients suffer constipation.....i am the opposite and have had the trots for 11 weeks and am having tests for that....oh joy! could it be the meds? the stool test was clear so that was good news. Neck spasms, pain and rigitity also across the back were awful, i take RequipXL 10mgs at night and Co-Beneldopa (Madopar) 12.5/50 three times a day. Also had physio to begin with and do my exercises every morning that she gave to me. My legs generally now feel ok and i can walk pretty well since the meds. I exercise as much as possible which is helping with balance and co-ordination. I would certainly discuss your worries with your PD nurse, i am not qualified to diagnose and can only speak from my own experience but my legs were very heavy and weak when i was under medicated.

I wish you well matey.....please let me know how you get on

warmest wishes

Dolly

 


#8

Hi AngelaR

Sorry to hear your at your wits end, I know it's easy to say but try and be positive, there are plenty of people on here that will try to help.

I'm new to pd myself only being diagnosed in January even though I've had symptoms for years, thinking everything was down to my damaged spine.

Listing Symptoms ::- Short term memory loss, do something then it can be a couple of hours before I remember what I've done.  Severe tremor in left leg, mainly at rest.  Left shoulder freezes at various times. I have "lighthouse" hearing. Left hand and left foot are not always responsive, sleep disorder has been sorted with meds. Can only go out with someone as I can freeze on the spot on occasion. Have a tremor when sitting on the loo, like sitting on a moped.

Not sure that's everything but remember EVERYONE IS DIFFERENT.

Always found laughter helps, even at myself

Smile


#9

Dolly - it is a delight to hear from you and thank you for taking the time to answer. I am sorry I sounded so miserable yesterday but some days are awful, as you must know.  I was dragging my leg, in particular my left foot which, at times, just won't lift.

What is RequipXL I have never heard of it. Have you ever tried Sinemet? This is what I take but don't really feel any different after taking it apart from reduced stiffness. My walking is terrible and getting out of a chair is, at times, impossible.

I have rang my Parkinson's nurse now 3 times have not received a reply.

I like the picture of your cat...

 

 

 

 

 


#10

Hello Smile

Thank you so much for replying it does make me feel better. I was just having a bad day yesterday, my walking was terrible, dragging my left leg and I was on my own after my husband had been off for a week, so I was feeling sorry for myself.  I have a great family who support me but some days are just terrible, which I am sure you know.

What is lighthouse hearing?  Could I ask what meds you take?


#11

AngelaR

Lighthouse hearing. When taking to people with no outside noise I can hear fine. When theres background noise I have to stare at the person talking. A group conversation is a right laugh I only pick up a few words. In a Pub It near impossible without hard concentration.

Meds Detrusitol 2mg to stop me going to the loo times a night, Clonazepam 0.5mg a night aids REM Sleep.Citalopram 10mg in morning to help mood swings. Vitamin D because I'm defficient in it. 1800mg of Ibuprofen granules and 6 x 325 mg of Co-Proximal for pain relief per day. ( Not everyday).

By the way my avatar/picture is of my dat scan I had done last week, waiting to see neurologist to get some more meds !!!

Smile


#12

Hello Smile

Thanks for your med list but what do you take for Parkinson's?

 


#13

Hi AngelaR

Don't actually take any meds for PD, neurologist thought it wise to wait until after the Dat Scan to rule out any other underlying problem. I trust her to know what she's doing and after being like this for 18 years I might get something to help soon.

Smile


#14

Yes, it is me again......what is a Dat Scan?


#15

A feature of Parkinson's disease is a marked reduction in dopaminergic neurones in the striatal region of the brain. By introducing an nuclear agent that binds to the dopamine transporters a quantitative measure and spatial distribution of the transporters can be obtained. The image should show two equal comma shaped red/orange indicators going to white in the centre, mine doesn't.

Basically I had a tablet at 10:00 to stop my thyroid absorbing Iodine then at 11:00 I had an injection of nuclear material and then at at 15:00 had a 40 minute gamma scan.

Smile


#16

Amazing - sounds very complicated. What does this mean for you?


#17

Hopefully the scan will help decide what level of medication I need and of what type. The Non PD meds I'm on at the moment are really just helping me get proper sleep, something I've not had for many years. I think the scans will become more widely used in the diagnosis & treatment of pd in years to come and hopefully help lead to finding a cure.

All the Best, Smile.