Newly diagnosed and worried about medication


#1

Hello I have recently been diagnosed as having PD at first the neurologist said it was possibly PSP. I have a tremor, extremely tired, slow and very depressed but my only new symptom is the tremor. I have told my GP that I do not want to take the medication as the side effects are too many and I believe that most of my symptoms are because I am under a considerable amount of stress. I cannot cope with more problems to deal with and having to monitor medication etc, There is no set test to diagnose PD, am I wrong to stick to my beliefs and manage without neurologists. I am 70 and live on my own with two dogs, I would be interested in any one else's opinion, thank you.


#2

 

hi


extreme tiredness/fatigue , slowness, and tremor are all features of Parkinsons, stress will All amplify these.


A LOW  Starting dose of Sinemet  would be a good way forward if you wish to start medication, that may be 1 to 3 pills a day of the smallest dose 62.5 mg to start gradually built up to tailor the level your symptoms personally for you, I wouldnt expect much in the way of side effects other than a mild nausea which will pass after a few days, the sinemet would stimulate dopamine, over a few months you should notice a significant difference, it is important too try and keep the stress levels down.


#3

Hi, The medication suggested by the neurologist is Madopar and when I read about the side effects I am completely put off. The whole situation is so overwhelming I cannot deal with it, everything is getting on top of me, nothing is going to get any better only worse, no point in struggling any more.


#4

Hi Crawford,

It's understandable to feel overwhelmed and lost after diagnosis and worried about what the future holds.

But you don't have to face this alone, there are lots of people who can and want to help and support you through this.

Our Helpline team are on 0808 800 0303 - calls are free and confidential and the line is open until 7pm this evening. Please do give us a call and talk about how you're feeling - our advisers can answer any questions you may have and point you to where you can get support. And our Nurses can also help with any questions or concerns about medication.

And when our Helpline closes, the Samaritans number is 24 hours on 116 123.

Please do keep in touch and let us know how you are doing.

Take care,

Joanne

 


#5

 

I'm on Madopar, i have been for sometime and quite happy with it.

I can see the Anxiety and it's totally your decision, but There are definite benefits with either Sinemet & Madopar given time you would see them.


#6

Hi Crawford,

I have  been  on madopar since diagnosed over four and a half years ago,I have never had any side affects,and it has helped me greatly. After a couple  of  weeks of taking Madopar I knew a considerable difference.I do not have a tremor.

Hope this may help you decide,

Cheers  Anne. 

 

 

 

 


#7

I am also on madopar only.. I know I'm fairly new to this disease but so far the Med has been ok. Keeps my slight tremor on right side at bay.

 


#8

Hi Crawford,

No-one should make you take any drug if you don't feel comfortable with it. I have a friend with PD who chose to smoke cannabis and drink whisky, as a way of coping......it's down to each individual.

I too was reluctant to start taking Madopar and experimented with natural Levodopa, (Mucuna Pruriens), for 6 months, before deciding to go on Madopar. It really has made a difference and seems to help with depression as well.

I'm 67 and diagnosed 4yrs. ago. Previously put on Ropinirole which DID have sided effects, in my case, so came off it. Since being on the Madopar I feel more like my old self again. You could always give it a trial and see if it helps. Also, have you been given the opportunity to speak to a neuropsychologist? I had 6 sessions with one, when first diagnosed. It helps to talk to someone about your feelings.

Hope you feel more positive soon.......it all takes time to sink in and come to terms with such a devastating diagnosis.

Twinks.


#9

Hi everyone, thank you for your comments, it is so difficult to know what to do. I saw a neurologist back in May 2016 who gave me a diagnosis of Parkinsons possible PSP, and to return in four months. My GP was so surprised that he asked me if I would be happy to have another opinion and I said yes not even knowing quite what PSP meant, but I have since then discovered that it is Progressive supranuclear Palsy. My referral appointment for a second opinion was on the 20th September and this neurologist said it was Parkinsons and prescribed Madopar The appointment for the first neurologist if for next Monday 10th October but I am reluctant to see him as I am scared about the medication, diagnosis everything in fact. I did ring the help line and they gave me a number of someone but it is standard line charge call, I felt so desperate I rang 111 and they said they would tell my surgery but I have heard nothing, its all getting on top of me.


#10

Hi Crawford

I was diagnosed with PD October last year, I started on Azilect straight away.

I had my follow up on Wednesday this week with my neurologist and it was decided that I would go on to Madopar, three times a day at the lowest dose, I was dead against taking any more drugs but having had a good chat with the Dr, I decided that I would try them.

There are side effects to all drugs, but to be honest, I don't read about them, I just take the pills and see how I go, not saying that is right but it works for me.

I was scared when I first got diagnosed and thought that, that was it, game over, but, that is not the case.

Please do not let this get you down, there is a lot of help and support and medications, don't be afraid to try them.

I will let you know how I get on with them, but,everyone is different, so what works for me may not work for you.

I too get down and worry about the future and how this disease will change my life but lets live for today and try not too think too far ahead.

 

 

 

 

 


#11

I was diagnosed in June this year.

 

i can understand your concerns and I also fear the side effects.

 

they put me on Sinemet and it has been fine.  I haven't yet had a follow up appointment as huge wait for neuros on nhs here in essex.

 

my biggest problem is anxiety.  I have always had this, long before P started.  I take 30mg anti depressant and use mindfulness that I have made up based on the real thing.

 

i hope you find help and support on the forum.


#12

Hi donkey, mindfulness can be a great help I know. Helps you deal with things a little better especially when things get a bit hard going. 

All the best to you. 


#13

Yes it is the best thing. I use it to get to sleep and when I wake early.  I don't use a tape but do my own version which is very simple.


#14

I went to a course of sessions many years ago. Wasn't convinced to start with but then decided it wasn't so bad after all!  I could have done with a few moments today as work was manic! Have a good Sunday.