Hope the GP has taken blood presssure. Mine was 180 at the time I fell ill and I was having small strokes that were going unnoticed but were causing some symptoms.
In France they pay much more attention to blood pressure checks. Just a thought.
Hello Everyone,
Polly - yes I asked the P/nurse to take his BP last week and it was very high for him 150/110. he has never had high BP. I used to be a fitness consultant so our lives have always been very active and our BP's are one thing I have always monitored ( amongst others).
When the P/nurse saw the reading she was concerned but said that if he goes back on sinamet it can cause low blood pressure ( admitting to that side affect) and so it would then sort itself out!
Eileen Patricia - thank you for the referral info, I found it on the NHS website and am hoping we can choose our second opinion consultant as I am adamant I want to see a movement consultant and Parkinsons specialist.
Rico - Phew - so much information all over the net thank you for the link you added - my head is spinning, but I am printing out all the relevant things as I can then highlight the 'positive' and 'negative' things on paper, read and re read and then we can decide about being on the meds and which ones if any we want to try
Yes the fact that the nurse will not even consider that the meds may be causing some side affects makes me so frustrated. Also she just kept blanking me at the appointment and everything I said or tried to ask, she just kept repeating 'progression of the disease'. It was like talking to a brick wall and sadly I have no faith in her at all any more, we. It was also quite obvious she didn't want me there at all and it annoyed her that I was asking so many questions.
I just don't understand how hubby can go from being well and fit, to the state he is in now in just 9 months.
From reading LOTS of araticles I gather he had stage 1 P/disease when diagnosed. Does anyone have experience of such a fast prgression of the disease in just 9 months?
On another note, I have never been on a forum before and am still ploughing my way through everything on here and how to work it all. Everyone seems so positive and helpful, which is lovely.
Thank you everyone, I feel so selfish moaning when there are others on here so unwell. You are all fantastic and kind to take time to read my waffle and reply. I can never say how much it means to me. I hope everyone is having a well day and managing to keep cheery xx
Polly - yes I asked the P/nurse to take his BP last week and it was very high for him 150/110. he has never had high BP. I used to be a fitness consultant so our lives have always been very active and our BP's are one thing I have always monitored ( amongst others).
When the P/nurse saw the reading she was concerned but said that if he goes back on sinamet it can cause low blood pressure ( admitting to that side affect) and so it would then sort itself out!
Eileen Patricia - thank you for the referral info, I found it on the NHS website and am hoping we can choose our second opinion consultant as I am adamant I want to see a movement consultant and Parkinsons specialist.
Rico - Phew - so much information all over the net thank you for the link you added - my head is spinning, but I am printing out all the relevant things as I can then highlight the 'positive' and 'negative' things on paper, read and re read and then we can decide about being on the meds and which ones if any we want to try
Yes the fact that the nurse will not even consider that the meds may be causing some side affects makes me so frustrated. Also she just kept blanking me at the appointment and everything I said or tried to ask, she just kept repeating 'progression of the disease'. It was like talking to a brick wall and sadly I have no faith in her at all any more, we. It was also quite obvious she didn't want me there at all and it annoyed her that I was asking so many questions.
I just don't understand how hubby can go from being well and fit, to the state he is in now in just 9 months.
From reading LOTS of araticles I gather he had stage 1 P/disease when diagnosed. Does anyone have experience of such a fast prgression of the disease in just 9 months?
On another note, I have never been on a forum before and am still ploughing my way through everything on here and how to work it all. Everyone seems so positive and helpful, which is lovely.
Thank you everyone, I feel so selfish moaning when there are others on here so unwell. You are all fantastic and kind to take time to read my waffle and reply. I can never say how much it means to me. I hope everyone is having a well day and managing to keep cheery xx
Hello Everyone,
I thought I would give you all an update.
We went to see our GP and explained the situation re all the side affects.
She has agreed that if the side affects are so bad, then hubby should come off all the drugs.
She also agreed that if the 'twitchy hand' has not been helped, then why bother taking the medication.
She has given my hubby a staggered programme over 3 months to come of the Mirapexin and Azilect and we have to phone her every 2 weeks to let her know how he is doing.
Once off the drugs our GP wants us to have some time to get all the drugs out of his system, see how he is and then look at getting a second opinion.
I feel so relieved that someone believes us that the side affects are worse than the original symptons.
Thank you all for all your help and advice. I will let you know how hubby is doing over the next few weeks.
I thought I would give you all an update.
We went to see our GP and explained the situation re all the side affects.
She has agreed that if the side affects are so bad, then hubby should come off all the drugs.
She also agreed that if the 'twitchy hand' has not been helped, then why bother taking the medication.
She has given my hubby a staggered programme over 3 months to come of the Mirapexin and Azilect and we have to phone her every 2 weeks to let her know how he is doing.
Once off the drugs our GP wants us to have some time to get all the drugs out of his system, see how he is and then look at getting a second opinion.
I feel so relieved that someone believes us that the side affects are worse than the original symptons.
Thank you all for all your help and advice. I will let you know how hubby is doing over the next few weeks.
Thanks for updating us. I have had the same side effects as your husband i.e. agitation and insomnia on the DA I take which is same as Mirexapam but branded Sifrol. Now I take half the doze prescribed and have quality of life again.
Well done Sallyann!
Good news indeed. Once off you will hopefuly see an MDS. Then if your husband has to take meds they can be added one at a time.
Hope that your husband is feeling and continues to feel better.
Bets wishes to you both,
rico
Good news indeed. Once off you will hopefuly see an MDS. Then if your husband has to take meds they can be added one at a time.
Hope that your husband is feeling and continues to feel better.
Bets wishes to you both,
rico
Hi everyone
My name is Cindy I am 64 and was diagnosed with PD last November ( so shocked) and imediatley put on Akinetone for tremors in right hand, and referred to a neurologist specialising in PD, who confirmed it was by telling me my right arm did not swing.
the akenitone helped a lot, but didn´t stop them. Neurologist put me on a small dose 0.25 mg of Ropinorol 3 times a day. I didn´t notice any difference, in fact i was getting worse.
My GP then decided to put me on Sinemet I only took one tab and was rushed to hospital suffering with anaphylictic Shock a very bad alergic reaction. GP then gave me 2 weeks grace and decided to start me on Madopar, I was like a zombie and symptoms where getting worse I was falling over all the time, so what did they do but increase the Madopar x 2 .
A close friend who had been away on holiday on her return had a shock to see me so poorly. I took it upon my self to stop the Madopar and after 3 days I was back to my normal self.
GP decided i needed to see neurologist again and he said I was suffering from parkinson´s very mild and I hadn´t got any worse than when he last saw me.
He decided he needed to double the dose of Ropinerol to .5mgs 3 times a day.
I have had 2 falls this week and have taken it upon myself to come off the medications by missing out the morning dose 1st day and both morning and afternoon dose today. I can´t believe how much better i feel already
, so tomorrow I will reduce the evening dose and see how I am Sunday.
I will be seeing my GP next week so will let you know How I get on.
Or I have been wrongly diagnosed as most of you seem to be doing quite well on medications.
I am only writing this on the forum as it looks like some of us either haven´t got parkinson´s or Dr´s seem to be prescribing medication to soon.
Bye for now Cindy
My name is Cindy I am 64 and was diagnosed with PD last November ( so shocked) and imediatley put on Akinetone for tremors in right hand, and referred to a neurologist specialising in PD, who confirmed it was by telling me my right arm did not swing.
the akenitone helped a lot, but didn´t stop them. Neurologist put me on a small dose 0.25 mg of Ropinorol 3 times a day. I didn´t notice any difference, in fact i was getting worse.
My GP then decided to put me on Sinemet I only took one tab and was rushed to hospital suffering with anaphylictic Shock a very bad alergic reaction. GP then gave me 2 weeks grace and decided to start me on Madopar, I was like a zombie and symptoms where getting worse I was falling over all the time, so what did they do but increase the Madopar x 2 .
A close friend who had been away on holiday on her return had a shock to see me so poorly. I took it upon my self to stop the Madopar and after 3 days I was back to my normal self.
GP decided i needed to see neurologist again and he said I was suffering from parkinson´s very mild and I hadn´t got any worse than when he last saw me.
He decided he needed to double the dose of Ropinerol to .5mgs 3 times a day.
I have had 2 falls this week and have taken it upon myself to come off the medications by missing out the morning dose 1st day and both morning and afternoon dose today. I can´t believe how much better i feel already
, so tomorrow I will reduce the evening dose and see how I am Sunday.
I will be seeing my GP next week so will let you know How I get on.
Or I have been wrongly diagnosed as most of you seem to be doing quite well on medications.
I am only writing this on the forum as it looks like some of us either haven´t got parkinson´s or Dr´s seem to be prescribing medication to soon.
Bye for now Cindy
the problem is that everybody reacts so differently to all this medication.
I have tried a number of different dopamine agonists. Some worked, some didn't, some made it much worse, some gave me extreme symptoms.
Medical profession are very scientific, they can't accept that these drugs don't work for everybody. they need to start listening to the people who are experiencing these drugs.
If you're taking medication that makes you feel ill, stop taking them and you feel better, that is pretty clear indication that it's the drugs that are making you feel ill.
I made that clear to my own neurologist, following which he referred me to Parkinson specialist who listened!!!.
There is more than one neurologist out there,so if yours doesn't listen to you
asks to see another.
I have tried a number of different dopamine agonists. Some worked, some didn't, some made it much worse, some gave me extreme symptoms.
Medical profession are very scientific, they can't accept that these drugs don't work for everybody. they need to start listening to the people who are experiencing these drugs.
If you're taking medication that makes you feel ill, stop taking them and you feel better, that is pretty clear indication that it's the drugs that are making you feel ill.
I made that clear to my own neurologist, following which he referred me to Parkinson specialist who listened!!!.
There is more than one neurologist out there,so if yours doesn't listen to you
asks to see another.
forgot to mention, I also suffer from Spinal Stenosis and am Taking Carbomazipine Amitryptiline, Lyrica and Arthrotec, dol-u-ron at night and can take during day if needed,neurologist wants me to stop taking Carbo and Amitryp and has put me on a 45 day reduction programe for Carbo, now 15 days into and my Sciatica is back, but will persevere with as long as I can, He did say we can up the dose of Lyrica if needed.
I feel a lot better since I reduced Ropinirol.I am on a 45 day programme of Amitryp I have been on these for 20 years and have stopped drinking Alçohol which I always had a whisky at night,
I haven´t had any alcohol drinks now for 2 weeks and haven´t seen any difference, but will stay of drink fgor ever if I have to
( I have found it easy to give it up) and now drink apple juice when i go out socialising.
I am still searching the internet to find any thing more about this and am shocked to find so many people with similar symptoms to mine.
I look forward to hearing from anyone on this Forum.
Regards Cindy :-)
I feel a lot better since I reduced Ropinirol.I am on a 45 day programme of Amitryp I have been on these for 20 years and have stopped drinking Alçohol which I always had a whisky at night,
I haven´t had any alcohol drinks now for 2 weeks and haven´t seen any difference, but will stay of drink fgor ever if I have to
( I have found it easy to give it up) and now drink apple juice when i go out socialising.
I am still searching the internet to find any thing more about this and am shocked to find so many people with similar symptoms to mine.
I look forward to hearing from anyone on this Forum.
Regards Cindy :-)
i So glad this thread has come up again ..
Parkinsons is such a complex illness isn't it .
Difficult for sufferers and the medical proffession to treat ..
I have lately started to feel that my gut instinct is as good anything to go by .
There are no test to diagnose it , the consultants and Gp can only go by what you tell them and then their opinion as they watch you rise and walk and your reactions ..
7yrs ago when my husband went for an opinion he was finding it difficult to walk , his balance was poor and he drooped to his right side . He also had an occasional slight tremor which stopped once he grabbed hold of anything .His concentration was poor .
He has been on Sinemet rising to Sinemet Plus along with a Rotigotine patch .
I can't honestly say they have ever made any improvement , other than the patch which seemed to help his concentration .
Of course we all know it's a progressive illness but lately it looks like whenever he takes a tablet he becomes worse his speech worsens and cannot stop drooling . Dammed if you take the meds and dammed if you don't .
Recently we have been reducing his Sinemet very slowly although it is worrying . he appears to be NO WORSE and even BETTER .. Even his skin has much improved ...
O by the way he also has been troubled with fluid retention but during this time also diagnosed with heart failure .
Which comes first the chicken or the egg .
During this time he has also been diagnosed with heart failure .
Duri
He started on
Parkinsons is such a complex illness isn't it .
Difficult for sufferers and the medical proffession to treat ..
I have lately started to feel that my gut instinct is as good anything to go by .
There are no test to diagnose it , the consultants and Gp can only go by what you tell them and then their opinion as they watch you rise and walk and your reactions ..
7yrs ago when my husband went for an opinion he was finding it difficult to walk , his balance was poor and he drooped to his right side . He also had an occasional slight tremor which stopped once he grabbed hold of anything .His concentration was poor .
He has been on Sinemet rising to Sinemet Plus along with a Rotigotine patch .
I can't honestly say they have ever made any improvement , other than the patch which seemed to help his concentration .
Of course we all know it's a progressive illness but lately it looks like whenever he takes a tablet he becomes worse his speech worsens and cannot stop drooling . Dammed if you take the meds and dammed if you don't .
Recently we have been reducing his Sinemet very slowly although it is worrying . he appears to be NO WORSE and even BETTER .. Even his skin has much improved ...
O by the way he also has been troubled with fluid retention but during this time also diagnosed with heart failure .
Which comes first the chicken or the egg .
During this time he has also been diagnosed with heart failure .
Duri
He started on
i So glad this thread has come up again ..
Parkinsons is such a complex illness isn't it .
Difficult for sufferers and the medical proffession to treat ..
I have lately started to feel that my gut instinct is as good anything to go by .
There are no test to diagnose it , the consultants and Gp can only go by what you tell them and then their opinion as they watch you rise and walk and your reactions ..
7yrs ago when my husband went for an opinion he was finding it difficult to walk , his balance was poor and he drooped to his right side . He also had an occasional slight tremor which stopped once he grabbed hold of anything .His concentration was poor .
He has been on Sinemet rising to Sinemet Plus along with a Rotigotine patch .
I can't honestly say they have ever made any improvement , other than the patch which seemed to help his concentration .
Of course we all know it's a progressive illness but lately it looks like whenever he takes a tablet he becomes worse his speech worsens and cannot stop drooling . Dammed if you take the meds and dammed if you don't .
Recently we have been reducing his Sinemet very slowly although it is worrying . he appears to be NO WORSE and even BETTER .. Even his skin has much improved ...
O by the way he also has been troubled with fluid retention but during this time also diagnosed with heart failure .
Which comes first the chicken or the egg .
Parkinsons is such a complex illness isn't it .
Difficult for sufferers and the medical proffession to treat ..
I have lately started to feel that my gut instinct is as good anything to go by .
There are no test to diagnose it , the consultants and Gp can only go by what you tell them and then their opinion as they watch you rise and walk and your reactions ..
7yrs ago when my husband went for an opinion he was finding it difficult to walk , his balance was poor and he drooped to his right side . He also had an occasional slight tremor which stopped once he grabbed hold of anything .His concentration was poor .
He has been on Sinemet rising to Sinemet Plus along with a Rotigotine patch .
I can't honestly say they have ever made any improvement , other than the patch which seemed to help his concentration .
Of course we all know it's a progressive illness but lately it looks like whenever he takes a tablet he becomes worse his speech worsens and cannot stop drooling . Dammed if you take the meds and dammed if you don't .
Recently we have been reducing his Sinemet very slowly although it is worrying . he appears to be NO WORSE and even BETTER .. Even his skin has much improved ...
O by the way he also has been troubled with fluid retention but during this time also diagnosed with heart failure .
Which comes first the chicken or the egg .
Hello everyone.
Just thought I'd weigh in with my DH's story so far.
He was diagnosed last August after a mild tremor alerted him something may be up in May last year. On diagnosis he realised that he also didn't swing his right (tremor) arm, had hardly any sense of smell, and that his handwriting had deteriorated. He was prescribed either ropinerole or rotigatine but chose not to take either.
This May he returned to see his Neuro who agreed that his tremor had got worse. (Now his whole arm shakes if it is a shaky sort of day), but that nothing else had changed. He said he thought it may be a good idea to wait as once you start taking them there is the whole problem of getting them right that had to be dealt with. He is one of those who does not think they slow down progression. He was also highly amused that my husband is a painter and decorator. 'You aren't still painting are you?' 'Actually yes I just painted the exterior of a house' ' Ho ho ho... well it is a resting tremor after all'
His advice (NOW)is that unless his quality of life deteriorates unacceptably he is probably best off without meds.
I don't know if animal studies are really relevant to pd as animals don't get pd and have to be given neurotoxic drugs so they can get drug induced parkinsonism which is a different thing I think.
Of course it is impossible to know what will happen if he takes meds until he does which is very annoying and scary for me especially after hearing stories like yours Sallyann and Johnnie, as well as the people who say how much better they feel..What to do?? Hope it all works out for us all. One thing everyone seems to agree on is exercise and positivity so we will keep on with those I guess.
Just thought I'd weigh in with my DH's story so far.
He was diagnosed last August after a mild tremor alerted him something may be up in May last year. On diagnosis he realised that he also didn't swing his right (tremor) arm, had hardly any sense of smell, and that his handwriting had deteriorated. He was prescribed either ropinerole or rotigatine but chose not to take either.
This May he returned to see his Neuro who agreed that his tremor had got worse. (Now his whole arm shakes if it is a shaky sort of day), but that nothing else had changed. He said he thought it may be a good idea to wait as once you start taking them there is the whole problem of getting them right that had to be dealt with. He is one of those who does not think they slow down progression. He was also highly amused that my husband is a painter and decorator. 'You aren't still painting are you?' 'Actually yes I just painted the exterior of a house' ' Ho ho ho... well it is a resting tremor after all'
His advice (NOW)is that unless his quality of life deteriorates unacceptably he is probably best off without meds.
I don't know if animal studies are really relevant to pd as animals don't get pd and have to be given neurotoxic drugs so they can get drug induced parkinsonism which is a different thing I think.
Of course it is impossible to know what will happen if he takes meds until he does which is very annoying and scary for me especially after hearing stories like yours Sallyann and Johnnie, as well as the people who say how much better they feel..What to do?? Hope it all works out for us all. One thing everyone seems to agree on is exercise and positivity so we will keep on with those I guess.