Newly diagnosed


#1

I have only been diagnosed a few days although I suspected for many months that I  had PD. On hearing the diagnosis I was quite calm about it but a few days on I'm beginning to realise the enormity of it. My consultantant has prescribed Sinemet tablets to help with the symptoms. As I always do, I read the information contained in the packet and scared myself to death! I'm still plucking up courage to take them. It would be nice to talk to anyone about these tablets and whether they do help with the symptoms?

 


#2

Hi Sue B

Am also new to forum and as am not on meds sorry can't answer question. The notes that come with meds are always scary but I don't think the drs would give them unless sure would help. Still reading through comments on forum I am sure someone with more experience will set your mind at rest and there is the helpline no. as well.


#3

Thanks for your support.  I have decided to start the meds and see what happens.


#4

Hi Porthos,

Thanks for your reply.  Sorry for the brief post above but my tremor posted it before my brain wanted to!  I'm quite lucky with my GP because I was referred straightaway on seeing him although it took 8 months to see my consultant. He is referring me for physio, a scan and to a Parkinson's nurse.

I suffer with a bad tremor in my right hand together with stiffness and pain in my right hand, arm and leg.  How long have you been diagnosed and how does PD affect you.

Sue B

 


#5

Hi, have had symptoms a while but complicated med history. I was already seeing neurologist for epilepsy and GP was convinced that was all ..I needed that hecwould pick up on anny other problems and that it was all down to anxiety anyway. Sorry about spelling, can't cope with the auto spell thing it writes strange stuff so turn it off but I seen to tap on wrong buttons and write weird stuff as well. Symptoms resting tremor in right hand going up arm. Staring gaze, used to be nicknamed the smiley lady but not anymore, not so expressive. Dreadful pain in right shoulder and neck, about to start physio for that. Very slow physically and cognitively. Dizzy and unbalanced when standing or changing direction. Feet suddenly glueing themselves to ground, actually got pushed over when out once by man shouting out of my way, couldn't believe it. Used to be intercepted at work by supervisors who thought I had turned up drunk, that was really annoying. Memory will go, will be in places don't know how why or even where to go home. That has even happened in my home. Have been talking to people thinking do I know you you seem to know me and have thought my daughter my cousin a few times. Problems swallowing. Urgency and accidents, embarrassing. Hallucinations didn't tell drs about that till recently, didn't want to be stuck back on anxiety wheel. Get fatigued easy. Don't sleep, sure some of problems would be less problematic if could sleep. Crasmps in feet and legs. A lot of silly things that are up to big nuisance. Used to be very active, worked, did voluntary work in conservation, taught youngest at home till he went to college, enjoyed hillhiking and would have liked to have a go at great north run and walk the length of Hadrian's wall one day. I have a working diagnosis from end of Jan on the letter duplicate of the one sent to my GP it says mild Parkinson's with psychological overlap and am having datscan in April and next consultant visit end of June when I am hoping to have some carecplan and say forward.


#6

Hi Sue and Porthos

my hubby was diagnosed just over 3 years ago and before that he had several trips to GP with various troubles/problems. With hindsight they were all related to PD.

Once he got diagnosis the lovely consultant asked there are 2 meds on the market for you. Have you got OCD then one of them is not for you. As hubby has mild OCD about some things, consultant has put him on madopar. Never had a scan or any other tests. He sees consultant every 6 months, lovely chap he is and we also got lovely Parkinsons nurse, who is snowed under, so not seeing as regular but we can ring her and ask her questions any time. Now also got email from pa to consultant, so no more anxiety attacks on what to do when given new medications and then after taking them starting to have questions.

you can also ring the helpline on Parkinsons UK, they are also superhelpful.

Welcome on board


#7

Hi Sue. How are you getting on? Hope the meds are working for you.smile


#8

Hi Porthos,

Thanks for your concern.  I've not been on the web site recently as I have had problems with my computer and only received it back from the menders today so I apologise for not getting back to you before now

I started the meds about a week ago.  I should take 2 x 3 daily but the consultant said to build up slowly so am at present on 1 x 3 daily.  I have been feeling a bit nausious with them but have also been prescribed anti-nausia tabs to take when it gets too bad.  I shall be rattling before too long.  I don't know whether it's my imagination but I seem to be a little more flexible and the pain in my upper arm seems to have eased a touch.

I am sorry that you seem to have so many problems especially with Parkinson's not being diagnosed with you recently and with your other health concerns too.  Perhaps we can support each other.  I believe there is a way we can message each other directly. Let me know if you wish to.

Look after yourself and I hope to hear from you soon 

Sue B


#9

Hi Sue 

I keep losing this post, 3rd time lucky?

Sorry to hear about the nausea, it must make it hard to work out if the meds are working. From what I  anwork out the drs match up the meds to the symptoms you have because everyone has different problems like bespoken! Hope you feel the improvement soon.

Have had a trying few weeks, but everything calmer now. I just need to be patient and see what happens, but it would be nice to have some answers.

I don't know how the messaging works but would give it a try if you like, it would be nice to keep in touch.

Take care


#10

Hi Sue,  I am very new on this forum too but not new to PD, i have had it for possibly 7yrs , diagnosed for 5. It helps some people knowing what to expect and reading side effects to meds. Possibly the sensible thing to do to check out what goes into your body. I am the opposite, i never ask what will happen because it may not be quite the same for you, plus you're just waiting for it to happen and sometimes convince yourself it is. I have a couple of other health issues to contend with but keeping as fit as i can is the key to coping with what i have. Oh and a little ignorance too. I hope your meds are working and you're managing the condition. Take care