New to forum, confused about everything


#1
My husband has had a 'twitchy' finger for 4 yrs and was told he had a trapped nerve.Last November he was sent to see a neurologist and diangnosed with Parkinsons after a physical exam. He had nothing but the twitchy finger, was slim, very fit, active ( jogging regularly) and very articulate.
First he was given sinamet and was very ill for about 2 months spending most of his time in bed as felt dizzy, sick, or just plain exhausted.
After sinamet doses were changed he felt a little better and the finger wasn't so twitchy, but not cured.
We returned to the P/Nurse and he was taken off sinamet and put on mirapexin and anti sickness drugs. Over the last 6 months he has started to trip and fall, his hand is stil twitchy and he hasn't had a full nights sleep since first being given sinamet.
He wakes after 2 hrs sleep agitated and spends 3 hours in the night pacing the house, then comes back to bed and only sleeps a few hours and then gets up again.
We saw the P/nurse again last week as I am very concerned the side affects of the drugs are actually worse than the original twitch in his hand.
He now has 10 physical sypmtoms, from fluid retention to tripping and 12 mental health issues from panic attacks to agoraphobia.
I tried to explain my concerns to the P/nurse as he has no quality of life on these drugs. She wasn't at all interested in my views and has now said he should be put back on sinamet as well as the mirapecin and azilect.
I told the nurse I will be seeing our GP and aksing for a second opinion as Parkinsons seems so hard to diagnose and I am not happy with the side affects of the drugs
I have spent the last few days researching as best I can these drugs and the side affects and am very concerned about the sinamet as he is only young and at worst was at stage 1 with this disease.
We have a reasonably nice GP and I see no reason for her to refuse us a second opinion with a consultant. I want to be able to choose the consultant as want a specialist in Parkinsons and movement disorders to advise us.
Can anyone tell me if we are allowed to choose the second opinion consultant on the NHS??
Can anyone also comment if their side affects are actually worse than their symptoms?
Amy advice gratefully received as I am exhausted and very concerned. Thank you in advance for any advice

#2
Dear Sallyann, I'm sad to hear your story. There is an interesting thread on "Neurotalk", an American PD forum, about Sinemet.It's called " I don't have PD, all the symptoms are from Sinemet". You go to the Parkinsons section of the site, and it's on page 8 at the moment. It was posted by "Dogma" on 26th June. Read right through it. I realise that your husband does have PD, which is a different scenario to Dogma's, but the thread opens your eyes to the "side effects" that Sinemet can cause. I hope this is useful. I wish you both all the best. Carole.

#3
Hi Sallyann
Welcome x
My o/h was diagnosed nearly 10 years ago at 44, but still remember the shock and confusion at the time so cam empathise. We were lucky (if you can call it that) that our GP was a clinical fellow in neurology so dx straight away we also had good support but know it is a post code lottery.

It the patient's right to have a second opinion as you have probably read the disease progression for PD is very individual and at diagnosis it is important that the patient either starts meds or waits and finds the correct combination.

Why don't you call the PD helpline number and speak to one of the nurses there, you will find the number on the home page.

In my opinion from a personal and professional position the internet can be good but also scary where health and diseases are concerned.

Hope to speak to you again

Take care bubble x

#4
Thank you both for your replies. I am so grateful just to have someone interested in reading and replying and willing to listen.
Butterfly, Thank you - I have read the post you suggested about the side affects of sinamet and it is similar to the information I have found on the internet. We were told sinamet would slow the disease down, but it seems it just helps the symptoms as the disease progresses.This is why I am so confused, because I have also read that there is no drug on the market to slow the progession, but again we were told all the drugs he is on would slow the disease down. We would rather suffer a few twitchy fingers until things get worse, than take all these drugs that we perhaps need to save for a little later on. This where the P/Nurse would not listen, all she kept repeating was 'well it's the disease progressing causing all these different things'. But thse symptons only started when he staretd taking any drugs. I think I offended her when I tried to discuss a second opinion and got the impression she thinks I don't acccept the diagnosis. I do, but I also want the best way for him to have a decent quality of life.

Bubble - Thank you also for your reply, I considered the helpline, but after the negative response from our P/nurse I changed my mind. I will now call them this week. I hate bothering people, perhaps they will be able to explain to me whether the drugs will slow the disease or just deal with the symptoms.
We weren't given a choice or told we could wait before taking any drugs. We were told 'you have p/d and need to take these drugs'
My husband knows whatever the future holds, we will get through it together, but he is terrified to go against the nurses decision to take all these drugs, so to have someone else to advise us as well may help us to make a proper well informed decision.
Thank you both once again for your posts, you are very kind.

#5
hello sallyanne , I too was prescribed sinemet by a neurologist who has a special interest in PD. I was told it may help some of my symptons notably muscle tension & slow movement. For the first few weeks of taking a low dose I honestly thought it was giving my PD a booster. Your husband reaction to it mirrors mine But I am persevering as I want to be able to reduce the dose of Requip that I also take. The Requip makes me violently sick.
And it is improving but not in a nice straight line
I believe the jury is still out on the Q of whether or not sinemet slows down disease progression. My neuro is of the opinion that it does not.

#6
Hello Sallyann,and welcome to the forum I do not take Sinamet but I would like to tell you my story. I WAS DX 6yrs ago at 57 started with symptoms at around 5O mine started also with a twitching little finger,When first DX I didn't start medication for a year then I was started on Requip Every time I saw or spoke to the PD nurse,she upped the dose.I was then put on a low dose of Madopar,which I admit to feeling better than I had for a long time.Then wham I saw the PD nurse at a regular appointment and she suggested I double the dose.I had a rash all over my body started tripping and fell slurred my words became panicky,and wasn't well at all. I was told by the Pd nurse it wasn't my medication and was not referred to my consultant and told to go to my doctor.I went back down to my original dose and things are back to normal. I feel personally we are all treated the same and not as an individual Best of luck Angel4u

#7
Hi sallyanne

there is a tendency with neuros to hurl people onto a medication regime, without allowing them pause for thought.
You are quite correct, no existing meds are proven to halt or slow the disease, and each drug regime carries side effects whilst eventually desensitising the areas it works on.
Many people swear by their drug regime, some like me choose to take no meds (one year on so far ). There are others on this forum not on meds too.

It is a personal choice as to the route you take

My advice is to google the subject and use forums such as this to draw your own conclusion. Other useful sites include Neurotalk (mentioned by butterfly) and the Viartis web site - read through past news posts for an excellent overview of developments over the last few years.
If for the time being you choose to cut down on your meds, you must consult your doctor, there are problems involved with suddenly stopping them.

Everyone is different - a refrain you will come across time and time again !

Good luck - Peter

#8
Hi

I too presented with twitching and an achy arm and leg. Nothing i couldn't cope with. Was diagnosed with PD at put on Mirapexin. Initially it was great, the pain went completely from my leg and my twitch was much less pronounced, As I increased the dose however, the side effects kicked in. I have never felt so sick in my life, shaking like a leaf and felt like death.
I remember saying to my husband "I feel worse on the meds than I did without them, my symptoms came back with a vengeance and i felt awful.

On the advice of a PD nurse I reduced the dose again and immediately felt so much better in myself. The nausea has improved hugely (((I have always taken anti-sickness meds)and although the dragging ache in my shoulder is worse I can cope with that.

Perhaps your husband needs to persist for a bit longer to allow his body to adjust to the drugs or speak to the PUK nurse for advice.

Hope it gets sorted for him soo.

#9
Angel.. Its the same old story . Has anyone told you that it can take quite awhile for your body to become used to the different doses ? Nobody ever told us , with the result we have sometimes given up . Its 5 years since my husband was diagnosed and he doesnt seem to be able to recognise any differences himself .. So it is left to me to endeavor to work out ..

I have ssince come to the concusion that smaller does more often are better and its only you or your family who can tell . The Doctots nurses can only go by what you tell them .

Over the last 5yrs I have searched the net to find any information that I can , it has been an enormous help , don't know how I would have managed without it .

We knew nothing about Parkinsons until this happened . When I was a little girl a gentleman who lived near us would tremble stand at the foot of his stairs and rock back and fore thenn run through the passage , wouldnt be able to stop and finally end up across the other side of the road . Luckily this was before we had the traffic we have now . It was Parkinsons before we had all this medication

#10
A big thank you to all of you for your kind posts and advice. I am so grateful for you all taking the time to read my post and respond.

I am going to continue researching, asking lots of questions of everyone and anyone who has any experience of Parkinsons and the drugs that go alongside the diesease.
I am going to speak to someone on the helpline here and also ask our GP to refer us to another consultant and offer to pay provately if need be to see a neuro speacialising in P/D and movement disorders.
Once we have a bigger picture, we will hopefully be able to decide what to do. I am so afraid of hubby taking drugs that he may not need that seem to take away his quality of life, but also afraid that if he doesn't have them it will shorten his life expectancy.
Thank you all so very much. xxxx

#11
hi sallyanne,i was started on sinimet cr last year and so far have been ok, am sorry to hear that your hubby is having such a bad time, your pd nurse sounds an absolute horror, not sure where you live but i see a consultant neurologist called proffeser david burns he practises at the rvi in newcastle which is about 2hrs away from where i live i asked my gp for a refferal as he had been recomended by another sufferer and i had,nt seen any neurologist for about 4yrs just the pd nurse, he is brilliant he has a special interest in pd does a lot of research, i will be attending the movement and disorder clinic in october its well worth the journey, dont know if you have heard of him just a thought as you said you were seeking a second opinion, dont know if you watched the documentry on channel 4 on friday following vicki dillon a pd sufferer he was on that worth the travelling hope things work out. sue.

#12
Hi SallyAnne,

Unfortunately I cannot lay my hands on a reference but I have read several times that over medication with sinemet can produce the same symptoms as under-medication. I can't imagine why anyone would be put on drugs at the stage of a twitchy finger which had taken four years to get a bit more twitchy and your husband not complaining about anything else - that's if I've read your post right. The neuro may have seen other "parkie" type things not obvious to the lay person but even with my classic symptoms including shaking down one side my neuro asked me whetherI wanted to go on meds. which I did. Your PD nurse sounds a bit arrogant and you do well to be worried about over-medication .
Meds. are meant ideally "preserve function" to use the jargon and in that sense can be thought of as arresting the disease but the actual disease process in the brain is still going on hence the increasing doses - supposing the starter dose was right in the first place. I take Azilect which is claimed (proved in animal studies) can arrest the progress of the disease but I've not seen any claims like this for other standard meds. for PD. You will find the Parkinson UK helpline is very good and I do hope you manage to see a movement-disorder neuro. I was very fortunate in that things have been straight forward for me but others on this forum have said that they have found it well-worth going privately if only the once because you get listened to and there is time for some real communication.

#13
Hi SallyAnne,

Unfortunately I cannot lay my hands on a reference but I have read several times that over medication with sinemet can produce the same symptoms as under-medication. I can't imagine why anyone would be put on drugs at the stage of a twitchy finger which had taken four years to get a bit more twichy and your husband not complaining about anything else - that's if I've read your post right. The neuro may have seen other "parkie" type things not obvious to the untrained eye but even with my classic symptoms including shaking down one side my neuro asked me whetherI wanted to go on meds. which I did. Your PD nurse sounds a bit arrogant and you do well to be worried about over-medication a.
Meds. are meant "preserve function" to use the jargon and in that sense can be thought of as arresting the disease but the actual disease process in the brain is still going on hence the increasing doses - supposing the beginning dose was right in the first place
You will find the Parkinson UK helpline to be excellent and I do hope you get to see another neuro/movement disorder specialist. Others on this forum have found that even just the one private consultation was worth it for the increased time and allround better communication.

#14
Double post due to being told I was not logged in and post disappearing temporarily. I believe other people are having this problem

#15
Hi Sallyann,

Welcome to the forum!!

I agree with all EileenPatricia wrote.

Does your husband, in your opinion (as the neuro does not think so), have bradykinesia (i.e. slow movement) or rigidity (eg. in arm)? What about postural instability? I notice you wrote that your husband now falls but did he do so at the time of seeing the neuro? The neuro is a brave man to say your husband had PD based on a twitch (tremor). The general consensus is that at least two of the cardinal signs must be present for a diagnosis of PD to be arrived at.

I don't know if Sinemet will do much on "just a twitch".

"He wakes after 2 hrs sleep agitated and spends 3 hours in the night pacing the house, then comes back to bed and only sleeps a few hours and then gets up again."
Unfortunately this is the nature of the beast.

See other threads on Mirapexin and Azilect. Hit these terms in the "search our site" box on the top right hand side of this page. There are certainly passionate views (from personal experience) on Dopamine Agonists (DA's) such as Mirapexin. IIRC Azilect (rasagiline) is a monoamine oxidase (MAO) inhibitors. I have no experience in/opinion of these.

Good on you for getting a second opinion from a neuro (who preferably specialises in movement disorders). Did your husband start on Mirapexin and Azilect simultaneously?

Best of luck to you all on your appointment.
rico

#16
HI Everyone,
I can't thank you all enough for all your posts. Especially advice re second opinion and experiences you have had.
Before diagnoses, my hubby had no other symptoms other than 2 twitchy fingers. He had no cramps, no wobbles, falls or anything like that.
He also used to sleep like a log and never had a bad nights sleep in his life, everything I have mentioned that he has wrong with him now is since he was started on the drugs.
The nurse keeps saying its the progression of the disease, which it may well be, but he was only diagnosed 9 months ago and before diagnoses,just had 2 twitchy fingers.
One of my main concerns is that he has now put on over a stone in weight ( was allways slim) has fluid retention so bad he can't get his shoes on ( never had this in his life),his blood pressure is VERY high ( always low all his life) and now has panic attacks and agoraphobis ( never had these before). These symptoms worry me as his dad died young of a stroke and these symptoms together can cause heart problems.
He is also now at times like a small child,he just stares at me blankly and has trouble remembering conversations we had just an hour previously!
Before being diagnosed which was only 9 months ago he was working in a very important job, that entailed him communicating well with a multitude of people, being dynamic and articulate. Luckily he is self employed and we have been able to refuse work so he can have time off.
I will let you know how things progress, but feel so exhausted from worrying about what to do, I feel like such a moaner which is NOT like me.
I am eternally grateful to you all for listening and being there to share your experiences and also for taking the time to write replies. Thank you :smile:

#17
Hi Sallyann,

When is the neuro appt.? On the DA and MAO leaflets it should list the potential side-effects of these drugs. Does it look like one or both drugs are causing these problems, or are there more problems your husband is facing that are not listed?

Maybe your neuro can advise if it is an option to slowly come off one of both meds (under medical supervision) slowly and see if symptoms improve. Maybe the dosage is too high?

Arriving at a PD dx with only a twitchy finger (or two) and no slow movement, rigidity or postural instability seems hasty, let alone prescribing both an MAO and DA.

Best wishes and keep us posted,
rico

#18
Hi Rico and Everyone,
Re the neuro, we only saw him once on the initial diagnoses and then everything has been left to the Parkinsons nurse and we have to call her or e mail if we have problems and then we can get an appointment to see her, but we usually have to wait 8 weeks or so as she is so busy.
We have to go back to our GP to be referred for a second opinion and the P/nurse says even if we pay private our doctor has to agree to a referal to another neuro.
I am still scouring the net for all information as I want to have as much information as possible about the druggs and about private consultants as I am confident we will end up paying private.
The diagnoses is not really the issue, but the fact we were told the drugs would slow the progression of the disease which I am now not sure is true. Also the P/nurse will not entertain the fact that the drugs may be causing all some of the problems. For example fluid retention is one of the listed side effects on the manufacturers leaflet in the box , but still she says its the disease causing it not the tablets!
I am not sure but someone also told me that hubby will have to come off all the pills to enable a new doctor to examine and diagnose him, just in case the drugs give the new doctor a false picture of hubbys abilities. Soonce we see our GP I will know more and will make sure I keep everyone updated.
Thanks to you all on here, at least I don't feel like the evil wife who wants her hubby to suffer as he gets older and the disease gets worse, which is how I felt before I came on here .
Thank you xx

#19
Hi Sallyann,

I am sure the GP will give you the referral. Over here in Australia when my family needs a referral I go with said member of family to the GP who always asks "What specialists do you want to go and see". I then give him 1-2 names of specialists whose names have either been referred to me by doctor friends or by other specialists who have been treating my family (for various illnesses) and who I have built up a rapport with. Costs about $350 to see the specialist but get about 2/3rds of costs back through my private health fund. But my experiences of hospitals back in Italy, I won't talk about that! :imp:

"The diagnoses is not really the issue, but the fact we were told the drugs would slow the progression of the disease which I am now not sure is true."
Evidence has always been mixed at best on this. Some studies suggest that starting earlier on (some) treatements is better than waiting

http://www.medscape.com/viewarticle/581009
(the study referred to here was one of the big ones on PD)

though the general consensus is to start treatment only when your physical abilities are impacting on your life (pm me if you want references on this :grin:)

If that is not enough to confuse you I don't know what will :rolling_eyes:

"Also the P/nurse will not entertain the fact that the drugs may be causing all some of the problems. For example fluid retention is one of the listed side effects on the manufacturers leaflet in the box , but still she says its the disease causing it not the tablets!"
This would be infuriating!! I think a lot of professionals have it in their head that it is a progressive disease (which it is) but if somebody goes on meds and after a short time starts feeling unwell, I would have thought they could entertain the *possibiity* that it could be the meds.

I'm sure your husband will be able to be dx and advised without him coming off the tablets but if you could let the doctor know all the side-effects your husband suffers from and which meds, in your opinion and after reaseraching, are causing the problems maybe you can get to the bottom of this sooner rather than later.

Best wishes!!
rico

#20
Hi Sally-Anne,

Quote from NHS choices site: "You can ask your GP or another healthcare professional for a second or further opinion (an opinion about your health condition from a different doctor). Although you do not have a legal right to a second opinion, a healthcare professional will rarely refuse to refer you for one.", especially as I came across the comment that a lot of GP's go [private themselves.