Hi Jenniferchristine
i have decided to go to ths nuro appointent next week because it would be interesting to see what scan th nurologist has looked at to say what in did.im just going to hold back with comment until he has said his piece and then ask question about the dat scan and see if it was that or mri he looked at.what i was reading up on the forum if im not correct someone will put me right is that parkinsons does not show up on a mri scan.
then i will make my mind up wo see what my next step is
thankyou for yor reply and hope you have a good day!
Hi Janine.
That is probably sensible. I don't have any medical training but I think MRI (with o/h's results in mind) does show up what were described to us as white spots, of which o/h had far too many and as far as I can remember were somewhat indicative of the possibility of p/s but certainly not definitive.
Not very helpful I'm afraid.
Take care
JC
PS Please do p/m me if you would like to
That is probably sensible. I don't have any medical training but I think MRI (with o/h's results in mind) does show up what were described to us as white spots, of which o/h had far too many and as far as I can remember were somewhat indicative of the possibility of p/s but certainly not definitive.
Not very helpful I'm afraid.
Take care
JC
PS Please do p/m me if you would like to
Hi jenniferchristine
i would like that ,i will send p/m later if thats alright,and you replied about white spots on th scan that his what he ,has i remembered his other colleague had seen but i wont be sure until tuesday.i have got to go to work so i will contact you later early evening by p/m
thanks
i would like that ,i will send p/m later if thats alright,and you replied about white spots on th scan that his what he ,has i remembered his other colleague had seen but i wont be sure until tuesday.i have got to go to work so i will contact you later early evening by p/m
thanks
Hello JC & Jamine
My MRI scan also showed white lesions although this wasn't picked up on for over 1 year I was Told that an MRI scan is to rule out tumours & MS as possible causes of tremors & that a DAT scan is to confirm (or not) PD, but that even the DAT scan is not 100%. The cause of (my) white lesions is still up for discussion. It is all very confusing. It would seem that a neurologist makes a diagnosis based on how a patient pesents, and using their own experience which obviously varies from neuro to neuro. My initial dx several years ago was benign essential tremor & even I knew that was incorrect. Honestly, sometimes I feel like giving up
My MRI scan also showed white lesions although this wasn't picked up on for over 1 year I was Told that an MRI scan is to rule out tumours & MS as possible causes of tremors & that a DAT scan is to confirm (or not) PD, but that even the DAT scan is not 100%. The cause of (my) white lesions is still up for discussion. It is all very confusing. It would seem that a neurologist makes a diagnosis based on how a patient pesents, and using their own experience which obviously varies from neuro to neuro. My initial dx several years ago was benign essential tremor & even I knew that was incorrect. Honestly, sometimes I feel like giving up
Oh poor you Ab
Welcome to my uncertain world (not meant facetiously). Limbo land is not a nice place to be, bless your heart.
Welcome to my uncertain world (not meant facetiously). Limbo land is not a nice place to be, bless your heart.
Dear JC, we may be in luck. some experts say the Pope (JP2 I think) closed Limbo. On the other hand others disagree. Wouldn't it be nice if the "experts" got their act together
Hi JC
Thankyou so much for your post the other day, think it was on the meet and greet section but seems to have disappeared now (new at this) You mentioned you are in similar situation with o/h having PD.
I have read several of your posts and you mention that your o/h has LB has this been diagnosed recently.
Had a really scary time last year and early this year o/h supposedly had all the symptoms of LB or so they thought , went for the usual psychiatry/psychology assessments still not sure !! it was not until he started being violent towards me (totally out of character)that the Neurologist straight away said it was the DA stopped it.Since then it has been really awful for him,now mainly house bound ,decreased mobilty, memory loss and huge swings from off periods to dyskenesia for hours which has now affected his diabetes. It is a nightmare at the moment and do feel guilty saying this but I am really struggling. As yourself his family are in denial when they ask if he is ok think they expect him to say 'big mistake' not got PD, actually they do not even let him answer !!
the trouble his he thinks he talks to me about it but he doesn't really , he looks at me sometimes as if he hates me and other times blames me for everything even the PD .
I work full time due to mortgage, finances etc, have really stressful job dealing with death and dying but this sounds awful but sometimes don't want to come home, I have to check throughout the day he is safe and rely on others a lot more lately. I am expected because of my professional life to have the answers certainly different when it is at your door.
I would really appreciate if you could shed any light on LB or DA's , sorry for the rambling Take care x
Thankyou so much for your post the other day, think it was on the meet and greet section but seems to have disappeared now (new at this) You mentioned you are in similar situation with o/h having PD.
I have read several of your posts and you mention that your o/h has LB has this been diagnosed recently.
Had a really scary time last year and early this year o/h supposedly had all the symptoms of LB or so they thought , went for the usual psychiatry/psychology assessments still not sure !! it was not until he started being violent towards me (totally out of character)that the Neurologist straight away said it was the DA stopped it.Since then it has been really awful for him,now mainly house bound ,decreased mobilty, memory loss and huge swings from off periods to dyskenesia for hours which has now affected his diabetes. It is a nightmare at the moment and do feel guilty saying this but I am really struggling. As yourself his family are in denial when they ask if he is ok think they expect him to say 'big mistake' not got PD, actually they do not even let him answer !!
the trouble his he thinks he talks to me about it but he doesn't really , he looks at me sometimes as if he hates me and other times blames me for everything even the PD .
I work full time due to mortgage, finances etc, have really stressful job dealing with death and dying but this sounds awful but sometimes don't want to come home, I have to check throughout the day he is safe and rely on others a lot more lately. I am expected because of my professional life to have the answers certainly different when it is at your door.
I would really appreciate if you could shed any light on LB or DA's , sorry for the rambling Take care x
My dear bubble.
My heart goes out to you. You seem almost totally overwhelmed by your situation and the stressful job that you must do to keep the wolf at bay.
Yes my o/h was diagnosed as having LB but I'm about to challenge that by changing to a p/d specialist which will take time. He does suffer confusion now and then but only when stressed and is totally aware at all times. Not indicative of LB I would argue.
Firstly. I don't doubt that the DA's were responsible for your o/h's change in behaviour (see DA discussions in other thread) but what was he prescribed in their place?
Secondly. If your o/h is on another drug it wouldn't seem to be helping. Is another health care proff helping sort out the meds i.e. p/s nurse, with regard to the diabetes because it sounds as if he is suffering severe depression.
You say that you are having to rely on others throughout the day. What others?
Have you contacted social services to see what care services might be open to you?
Without the support of his family, the stress of your job and what you face each day when you arrive home, it's hardly surprising that you don't want to go there.
I'm afraid I don't feel I've been much help here but I would stress the importance of getting a referral to a p/d specialist if you don't already have one.
Please don't hesitate to p/m me if you would like a more in depth chat.
Kend regards
JC
My heart goes out to you. You seem almost totally overwhelmed by your situation and the stressful job that you must do to keep the wolf at bay.
Yes my o/h was diagnosed as having LB but I'm about to challenge that by changing to a p/d specialist which will take time. He does suffer confusion now and then but only when stressed and is totally aware at all times. Not indicative of LB I would argue.
Firstly. I don't doubt that the DA's were responsible for your o/h's change in behaviour (see DA discussions in other thread) but what was he prescribed in their place?
Secondly. If your o/h is on another drug it wouldn't seem to be helping. Is another health care proff helping sort out the meds i.e. p/s nurse, with regard to the diabetes because it sounds as if he is suffering severe depression.
You say that you are having to rely on others throughout the day. What others?
Have you contacted social services to see what care services might be open to you?
Without the support of his family, the stress of your job and what you face each day when you arrive home, it's hardly surprising that you don't want to go there.
I'm afraid I don't feel I've been much help here but I would stress the importance of getting a referral to a p/d specialist if you don't already have one.
Please don't hesitate to p/m me if you would like a more in depth chat.
Kend regards
JC
Hi everyone
I find myself gripped in an angry vice at the moment.
It's about the amount of pwp or not!
Why is it so hard to make a decision regarding the illness itself? I know of course that there are many neurological diseases and conditions out there and that nobody could be a specialist in all.
I know too, that most of our medical profession are caring and dedicated people who simply want the best for the people they treat.
It seems to me that in Britain, in a lot of cases, cons' sit on the fence rather than make a conclusive diagnosis, which leaves the poor patient in a state of limbo. A horrible place to be, creating tension and the worst emotion of all, insecurity.
Why is this? Is it fear of litigation if they get it wrong, or simply a lack of experts in certain fields? If so why can't we have those experts in place, not b****y miles away, at least in every county town? I don't buy the, 'there's no money" c**p.
We live in an enlightened age, our health services should amongst the best!
I find myself gripped in an angry vice at the moment.
It's about the amount of pwp or not!
Why is it so hard to make a decision regarding the illness itself? I know of course that there are many neurological diseases and conditions out there and that nobody could be a specialist in all.
I know too, that most of our medical profession are caring and dedicated people who simply want the best for the people they treat.
It seems to me that in Britain, in a lot of cases, cons' sit on the fence rather than make a conclusive diagnosis, which leaves the poor patient in a state of limbo. A horrible place to be, creating tension and the worst emotion of all, insecurity.
Why is this? Is it fear of litigation if they get it wrong, or simply a lack of experts in certain fields? If so why can't we have those experts in place, not b****y miles away, at least in every county town? I don't buy the, 'there's no money" c**p.
We live in an enlightened age, our health services should amongst the best!
O/h is bad at the moment. The decision of his neuro not to increase his dose of Sinemet Cr was a bad one.
He's back to shuffling, mask expression, fatigue and weakness, to mention but a few symptoms.
I'm not too great myself, getting a quite severe kidney infection on top of the C Diff I got recently so we're struggling a bit.
Anyone out there ever taken matters into their own hands and increased meds. If so what happened?
He's back to shuffling, mask expression, fatigue and weakness, to mention but a few symptoms.
I'm not too great myself, getting a quite severe kidney infection on top of the C Diff I got recently so we're struggling a bit.
Anyone out there ever taken matters into their own hands and increased meds. If so what happened?
I can understand the temptation to increase the dosage of prescribed medication. The difficulty I forsee is that a renewal will be requested earlier than expected & one would imagine(& hope) that the prescriber would pick up on this
Hi Ab. One of our GP's seems to know a lot about p/s. He increased o/h's meds himself once and o/h rapidly improved, therefore I'm pretty sure he would support any decision o/h makes if it helps his condition.
We're both unwell and shattered at the moment so don't want the hassle of making an apt and going to the surgery etc to do battle with another GP. That particularly well informed doctor is not in our surgery until next Wed.
Hence the temptation to take matters into own hands.
We're both unwell and shattered at the moment so don't want the hassle of making an apt and going to the surgery etc to do battle with another GP. That particularly well informed doctor is not in our surgery until next Wed.
Hence the temptation to take matters into own hands.
Dear JC, it is a tricky one. I know well the difficulty of having GP's in the same surgery who have different standpoints re medication. My last post stemmed from just such a situaion - one GP willing to increase dosage (for a non PD condition), another not, so I had to use a calculator to work out how much I could take without ending up medless 'til the next repeat prescription was due. Obviously I cannot encourage you or your husband to vary from the prescribed dose, but I can say that I wish you & your husband all the very best.
Just one suggestion - might it be an idea to discusss the matter with your PD nurse(if you have one) or the PUK helpline nurse. I did this when I wanted to vary my PD medication & informed the GP I had done so. I admit this was re decreasing the dose but it put my mind at rest
Just one suggestion - might it be an idea to discusss the matter with your PD nurse(if you have one) or the PUK helpline nurse. I did this when I wanted to vary my PD medication & informed the GP I had done so. I admit this was re decreasing the dose but it put my mind at rest
Hello Ab. That of course was a good suggestion. Unfortunately our p/d nurse attended the session o/h had with the neuro. Therefore I think she might be in hot water should she go against his decision.
His decision was based on o/h's hallucinations. He said that although they didn't bother o/h at all at present, one day he would act on them. Since the apt, o/h hasn't had one hallucination, therefore we've decided to talk to our excellent pharmacist today to see what he has to say before jumping in at the deep end.
His decision was based on o/h's hallucinations. He said that although they didn't bother o/h at all at present, one day he would act on them. Since the apt, o/h hasn't had one hallucination, therefore we've decided to talk to our excellent pharmacist today to see what he has to say before jumping in at the deep end.
got an appointment next week with nurologist and hope to be back on treatment,the hardest task i always come up against when admitted to hospital for anything is trying to tell and sometimes convince doctors and consultants ive got parkinsons because they always replie im too young.,but i used to be upset now it does,nt bother as much now cause always find im explaining the pd to them and giving them a insight to parkinsons which they are stunned i know alot about,when you have pd i find out has much as possible and their face is priceless.its been a rough year but as ever i will fight this pd and for better treatment and i also learned to stick up for myself against the doctors abit more.
Hi Janine
Good for you. Somehow even the most confident people sometimes crumble when faced with someone they feel has superior knowledge to them.
It's not easy for doctors and consultants actually. They are given ridiculously short time slots to see patients and a consultant we know gets very frustrated at not being able to give his patients the time they need to put their points across.
He says that very frustration causes him to feel slightly edgy and he has been accused as being unfeeling. Knowing him personally, he is a lovely man who cares deeply about his patients well being, but the system prevents him giving the attention he would like to.
The best way I've found to get your message over is to write a concise list to take with you when you see them. Short and punchy is the key. Then they can ask you more in depth questions as they see fit.
Always remember, the cons is a human being, is only doing a job and is no better or worse than you.
Good luck with your forthcoming apt.
Good for you. Somehow even the most confident people sometimes crumble when faced with someone they feel has superior knowledge to them.
It's not easy for doctors and consultants actually. They are given ridiculously short time slots to see patients and a consultant we know gets very frustrated at not being able to give his patients the time they need to put their points across.
He says that very frustration causes him to feel slightly edgy and he has been accused as being unfeeling. Knowing him personally, he is a lovely man who cares deeply about his patients well being, but the system prevents him giving the attention he would like to.
The best way I've found to get your message over is to write a concise list to take with you when you see them. Short and punchy is the key. Then they can ask you more in depth questions as they see fit.
Always remember, the cons is a human being, is only doing a job and is no better or worse than you.
Good luck with your forthcoming apt.
goog evening JC
Not had much chance to get back on the forum, had a difficult few weeks with health issues, mainly o/h.
Sounds like you have to , not always easy trying to keep those 'balls up in the air' !!
That was a good point you made re: sounding overwhelmed sometimes I do but the majority of the time just plain exhausted , but my solution is try not to think about it to much.
It has been particularly bad recently due to o/h deterioration, asked his PD consultant the other day is this how good as it gets and he answered sadly 'yes', nowhere to go with the meds anymore ( his opinion i know, but we have had a 2nd opinion) who said the same. We do have brilliant PD nurse who is excellent with all the latest research etc that helps. still hoping
you asked re: the DA's o/h was put on these very soon after dx apparently cus he was diagnosed at 43. Due to the behaviours he was 6 years downn the line taken straight off (as said by most severe withdrawal symptoms) he now takes Stalevo 150mgs 8 times a day, stalevo c/r 200mg OD, Madopar Dispersible 62.5mg OD ( and as needed within reason for a boost) Selegiline 10mg od, and for the diaphragmatic dystonia apomorphine 'apogo' sub cut injections 5mgs up to 4 times daily as attacks occur (unfortunately this is a DA family member but the only drug that helps the breathing)Most of the meds 'old hat' but they have run out of ideas ?
hope all this makes sense, noticed your post re: adjusting medications, o/h original neurologist used to give him fairly carte blance to make a decision re: extra dispersible within reason, o/h was (not so much now) a brilliant historian re; his PD and meds etc so think he used to let o/h make decisions within reason.
He has been very depressed but on Citalopram which does help. Would really appreciate if you can shed any light from your experiences and please if any other person could to.
Really appreciate this forum x
Not had much chance to get back on the forum, had a difficult few weeks with health issues, mainly o/h.
Sounds like you have to , not always easy trying to keep those 'balls up in the air' !!
That was a good point you made re: sounding overwhelmed sometimes I do but the majority of the time just plain exhausted , but my solution is try not to think about it to much.
It has been particularly bad recently due to o/h deterioration, asked his PD consultant the other day is this how good as it gets and he answered sadly 'yes', nowhere to go with the meds anymore ( his opinion i know, but we have had a 2nd opinion) who said the same. We do have brilliant PD nurse who is excellent with all the latest research etc that helps. still hoping
you asked re: the DA's o/h was put on these very soon after dx apparently cus he was diagnosed at 43. Due to the behaviours he was 6 years downn the line taken straight off (as said by most severe withdrawal symptoms) he now takes Stalevo 150mgs 8 times a day, stalevo c/r 200mg OD, Madopar Dispersible 62.5mg OD ( and as needed within reason for a boost) Selegiline 10mg od, and for the diaphragmatic dystonia apomorphine 'apogo' sub cut injections 5mgs up to 4 times daily as attacks occur (unfortunately this is a DA family member but the only drug that helps the breathing)Most of the meds 'old hat' but they have run out of ideas ?
hope all this makes sense, noticed your post re: adjusting medications, o/h original neurologist used to give him fairly carte blance to make a decision re: extra dispersible within reason, o/h was (not so much now) a brilliant historian re; his PD and meds etc so think he used to let o/h make decisions within reason.
He has been very depressed but on Citalopram which does help. Would really appreciate if you can shed any light from your experiences and please if any other person could to.
Really appreciate this forum x
Hi Bubble x
I'm so sorry things are as hard for you. There is little anyone can say when things reach such a stage, other than that we are all here for you.
It appears you have good medical support which is a god send and everything is being done to help your o/h with the meds, tho other members may have different view points on that score.
Your philosophy keeps you going, but when you're too exhausted to function that is the time to call in Social Services for help. It might be a good idea to get that in place now Bubble. The cuts are biting hard and will bite harder.
I was oddly enough, going to post today to tell Ab that we did increase o/h's meds by one extra Sinemet CR on Saturday and it did make a difference straight away amazingly. O/h has looked dreadful of late. Very grey faced, stumbling and at times almost incoherent through sheer fatigue. Now he has a little colour back. I arranged a telephone apt with one of our GP's who seems knowledgeable about p/s and he agreed we'd done the right thing, thank heavens.
The problem for us is that o/h really should be on much higher doses but as he was diagnosed so late on it is going to take ages to sort out and when they keep putting the apts forward it really doesn't help.
I'm glad you feel the forum is helping you but you are welcome to p/m me if things overwhelm you too at any time.
JC
I'm so sorry things are as hard for you. There is little anyone can say when things reach such a stage, other than that we are all here for you.
It appears you have good medical support which is a god send and everything is being done to help your o/h with the meds, tho other members may have different view points on that score.
Your philosophy keeps you going, but when you're too exhausted to function that is the time to call in Social Services for help. It might be a good idea to get that in place now Bubble. The cuts are biting hard and will bite harder.
I was oddly enough, going to post today to tell Ab that we did increase o/h's meds by one extra Sinemet CR on Saturday and it did make a difference straight away amazingly. O/h has looked dreadful of late. Very grey faced, stumbling and at times almost incoherent through sheer fatigue. Now he has a little colour back. I arranged a telephone apt with one of our GP's who seems knowledgeable about p/s and he agreed we'd done the right thing, thank heavens.
The problem for us is that o/h really should be on much higher doses but as he was diagnosed so late on it is going to take ages to sort out and when they keep putting the apts forward it really doesn't help.
I'm glad you feel the forum is helping you but you are welcome to p/m me if things overwhelm you too at any time.
JC
At times it hard to keep your chin up and get through the day, let alone a week or a month.
We need to adopt the attitude,
"Many of our fears are tissue-paper-thin, and a single courageous step would carry us clear through them".
Easier said than done but we can try no?
To all that are going through a bad patch my thoughts are with you!
ncn.
We need to adopt the attitude,
"Many of our fears are tissue-paper-thin, and a single courageous step would carry us clear through them".
Easier said than done but we can try no?
To all that are going through a bad patch my thoughts are with you!
ncn.
Hi NCN
agree with your thoughts, sometimes altho hard 'dwelling' takes up more energy, less energy to be postive and look for the little steps x
agree with your thoughts, sometimes altho hard 'dwelling' takes up more energy, less energy to be postive and look for the little steps x