Hello, me again, As some of you know, my husband was diagnosed with PD only last Wednesday. We seen a Neuro who's expertise was PD and Movement disorders. He was very good and we felt really comfortable with him, and as I have already mentioned he said he knew my husband had PD as soon as he set eyes on him, in fact the first thing he said to him is "how long have you had PD?" (before any tests were carried out) he then did the tests just to re confirm his first thoughts. The problem I am faced with now is this. The Neuro said he would like him to have a MRI scan, not that he's expecting to find anything else but just to dot the i's and cross the t's, he asked if this would be a problem, and asked if he was claustrophobic in any way, any way he arranged a letter for the scan. Since then my husband has been driving me mad, he does not want to have the MRI, under any circumstances. He did not say this to the Neuro because he was under strain and confused that he has just been dx with PD. He has been doing really well since the meds kicked in, but this scan has taken over his every thought now, he is making himself really ill over it. I have told him repeatedly that he can't be made to have it, but he is extremely concerned that if he is seen to go against the Neuro's wishes, that he may refuse to treat him, he's also worried about telling his GP that he does not want it, this is doing him no good at all he is really bad today, and its obvious the stress and worry of this. Any views most welcome love hols x
Hi. Is he able to express what in particular he is worried about? The scanning process itself or the results, for instance. Then it may be able to be addressed in some way.
Hi,
I must say I wouldn't go out of my way to have a scan and have declined to include it in my contribution to a research project I have volunteered for. The the neuro did not seem at all surprised at this - even to expect it so others feel the same. In my case I don't like the idea of being completely under the control of someone else in a confined space. I don't suffer from claustrophobia in other circumstances. I was told that you can sometimes have music playing.
And then of course, anxiety is another of the cards Mr. Parkinsons has up his sleeve - quite a few PWP's have developed anxiety not entirely related to the obvious anxiety about having a degenerative condition. Mild tranquillisers seem to do the trick with many people.
I must say I wouldn't go out of my way to have a scan and have declined to include it in my contribution to a research project I have volunteered for. The the neuro did not seem at all surprised at this - even to expect it so others feel the same. In my case I don't like the idea of being completely under the control of someone else in a confined space. I don't suffer from claustrophobia in other circumstances. I was told that you can sometimes have music playing.
And then of course, anxiety is another of the cards Mr. Parkinsons has up his sleeve - quite a few PWP's have developed anxiety not entirely related to the obvious anxiety about having a degenerative condition. Mild tranquillisers seem to do the trick with many people.
Hi, He accepts that he has PD, and he is not fearful of what the MRI scan may show, but petrified of the actual procedure, he and I never thought we would see the day that could cause him so much dread. He has dealt with such trauma throughout his career(fire fighter 30yrs), its hard to accept that things that you would at one time not bat a eye lid at, can become a major fear to you. Claustrophobia is something he would usually laugh at, but as with most things, no one knows the intense fear felt by a person,we only know how we feel as individuals. I think he just wants to be left alone, and not be messed around with anymore. I know that there are sedatives available for nervous patients, but he just does not want to go through with the scan. He said its all to much at once, and he needs time to feel better, and perhaps think about it in the future, so thats a little more positive then he's been for days, thanks for your kind ear, love hols x
Hi, I also meant to say that the majority of PWP I have read about, are given PD , dx without any scans, and because we decided to pay for private Neuro, we tend to think that the scan is just a way of showing that they have been thorough, because like i have said the Neuro said he dx my husband with PD straight away, prior to the tests he carried out. He said he was a clear cut case, love hols x
Hollytree
I had an MRI a few weeks ago.I arrived a bit early and so heard all the sounds that accompanied the procedure on the previous patient. Fine, I thought, I can cope with all that.
They settled me in and put pads either side of my ears, all OK so far. Then, at the very last minute they put some sort of metal contraption over my face;no explanation as to why, no comforting thoughts beforehand, and then I was on my way into the machine.
I had a buzzer to press if I was stressed and wanting to come out BUT, I had waited so long for this procedure that I did not want to press it.
As it was my neck being imaged I thought that it would only be a few minutes and that only my head and shoulders would be in the scanner. Before I went in I was told it would take 15mins. amd when the panic really set in I started to count the seconds and minutes away, hoping that I would last until the end of it.
A few times I opened myeyes and was met with a blankness, with no sense of perspective, completely no orientation...............that was very stressful.
I did last the 15 minutes, only just, and asked why it had taken so long when only my neck was needed to be scanned. I was told that whatever part of you needs t be scanned then ALL of you goes into the scanner. TG I did not know this beforehand or I really would have freaked out.
Maybe your OH has heard such horrendous tales and is actually petrified of this procedure. If so, I can well understand why.
Would I have an MRI again, yes, knowing what I know, but they certainly don't give you enough information beforehand to inform of you of what it is realy like.
Painless, yes but heartstopping, also a yes.
I had an MRI a few weeks ago.I arrived a bit early and so heard all the sounds that accompanied the procedure on the previous patient. Fine, I thought, I can cope with all that.
They settled me in and put pads either side of my ears, all OK so far. Then, at the very last minute they put some sort of metal contraption over my face;no explanation as to why, no comforting thoughts beforehand, and then I was on my way into the machine.
I had a buzzer to press if I was stressed and wanting to come out BUT, I had waited so long for this procedure that I did not want to press it.
As it was my neck being imaged I thought that it would only be a few minutes and that only my head and shoulders would be in the scanner. Before I went in I was told it would take 15mins. amd when the panic really set in I started to count the seconds and minutes away, hoping that I would last until the end of it.
A few times I opened myeyes and was met with a blankness, with no sense of perspective, completely no orientation...............that was very stressful.
I did last the 15 minutes, only just, and asked why it had taken so long when only my neck was needed to be scanned. I was told that whatever part of you needs t be scanned then ALL of you goes into the scanner. TG I did not know this beforehand or I really would have freaked out.
Maybe your OH has heard such horrendous tales and is actually petrified of this procedure. If so, I can well understand why.
Would I have an MRI again, yes, knowing what I know, but they certainly don't give you enough information beforehand to inform of you of what it is realy like.
Painless, yes but heartstopping, also a yes.
Hi Hollytree,
if the thought of a scan is causing Mike so much distress, call your neuro and canel it, He's already had his dx and the neuro certainly sounded clear about his findings. I would just call and say that Mike has had some time to think about it and would prefer not to have it as he has a phobia and was too confused at his appointment to say.
I'm pleased to hear that he is getting some help from the meds, just remember it can take some time until they find the right dosage/meds that suit him.
Take care
glenchass
if the thought of a scan is causing Mike so much distress, call your neuro and canel it, He's already had his dx and the neuro certainly sounded clear about his findings. I would just call and say that Mike has had some time to think about it and would prefer not to have it as he has a phobia and was too confused at his appointment to say.
I'm pleased to hear that he is getting some help from the meds, just remember it can take some time until they find the right dosage/meds that suit him.
Take care
glenchass
Hello again,
I too had to have a head and neck MRI (40 mins) recently as part of the exclusion of other causes of my symptoms ( on Boxing Day, no less!). I was not looking forward to it as I'd had a shoulder MRI (20 mins) the previous month and had found the noise and confinement really unsettling. However, despite having to be in longer and having a grille type thing over my face I felt much easier second time around. Probably as I knew what to expect. The supplied ear plugs helped a bit and with my eyes closed and some deep breathing the time went quickly. I hope your husband comes around to coping with it. I for one like all i's dotted and t's crossed. Good luck.
I too had to have a head and neck MRI (40 mins) recently as part of the exclusion of other causes of my symptoms ( on Boxing Day, no less!). I was not looking forward to it as I'd had a shoulder MRI (20 mins) the previous month and had found the noise and confinement really unsettling. However, despite having to be in longer and having a grille type thing over my face I felt much easier second time around. Probably as I knew what to expect. The supplied ear plugs helped a bit and with my eyes closed and some deep breathing the time went quickly. I hope your husband comes around to coping with it. I for one like all i's dotted and t's crossed. Good luck.
Hi I am suprised the nuero didn't suggest having a DAT scan where your hubby would sit on a chair and the plates go around his head. Much less stressful. If he has to have a MRI ask if they know of anywhere where he can go to have one of the new type of MRI where you just sit in the upright machine. My hubby suffers from claustrophobia so this was ideal for him instead of having to claw his way out of the MRI scanner.
http://www.uprightmri.co.uk/leeds.html
at the moment they say they only do it in London or Leeds but it is worth asking if there are any other centres that do it.
Sue
http://www.uprightmri.co.uk/leeds.html
at the moment they say they only do it in London or Leeds but it is worth asking if there are any other centres that do it.
Sue
Hi when I had MRI scan of head it was to exclude other things not to confirmPD. I only had my head inside the machine and there was a mirror in place so that I could see outside the machine and see the very charming nurse who held my hand. I insisted politely on this otherwise I wouldn't t have it done.They were very understanding as a lot of people are claustrophobic. Hopefully you will just need to ask.
Best wishes
Samdog
Best wishes
Samdog
Hi everyone, sorry about my late response. Thank you all for your great advice. I have contacted the Neuro as Glenclass advised, and its not a problem, he said we could discuss on the next appointment. I will also look at Sue's suggestion (MRI sitting down) didn't know about this. I think as the Neuro was so clear cut about the dx of PD, there really is no need for MRI, he said he wasn't expecting to find anything??? so just covering any areas I suppose. My husband seen his GP today, she said he would not of been offered an MRI on NHS if he were dx by NHS Neuro? which makes me more certain its because the Neuro is private, and he obviously wants no come backs, if that makes sense? love to all, have a good nights sleep, love hols xxx
Hi Hollytrees
My husband received positive diagnosis of Parkinson's with Lewy's on Monday (4/3/2013) This was by a Neurologist on the National Health and following 2 MRI scans (1, for brain, 1 for neck and spine) Numerous blood tests, Lumber punctures and a DaTscan. So I don't think being private or NHS makes a difference, but perhaps locatin does - we are in Kent.
The Neurologist told my husband the MRI scans were to rule out other illnesses - actually in my husband's case we had th 'with Lewy's' diagnosis on top of PD.
Hope this helps and good luck for the future.
Lynne
My husband received positive diagnosis of Parkinson's with Lewy's on Monday (4/3/2013) This was by a Neurologist on the National Health and following 2 MRI scans (1, for brain, 1 for neck and spine) Numerous blood tests, Lumber punctures and a DaTscan. So I don't think being private or NHS makes a difference, but perhaps locatin does - we are in Kent.
The Neurologist told my husband the MRI scans were to rule out other illnesses - actually in my husband's case we had th 'with Lewy's' diagnosis on top of PD.
Hope this helps and good luck for the future.
Lynne
Hi Michaele,
Like you mentioned it must be the area so called (postcode lottery)
My friend was dx last year after having all the numerous tests as your OH had, she waited a long time to get dx but did in the end. She has a very good GP, and lives in Hampshire area so she was able to receive all the trimmings obviously due to her postcode. I would not be happy for my OH to go and see a Neuro at our local hospital, as it has a terrible reputation, and that's bad enough without the 3 month waiting time. Not only the long wait but at the end of it, there was even doubt that he would end up seeing a Neuro, but more than likely a member of his team or even a nurse. I am sorry to hear of your OH Dx, I don't know what PD with lewy's actually is? I have read about PD plus, may be that is the same thing. The only thing we can do is keep as positive as all the lovely PWP on here, they are really amazing, and have advised me so much. Keep strong, keep positive, love hols x
Like you mentioned it must be the area so called (postcode lottery)
My friend was dx last year after having all the numerous tests as your OH had, she waited a long time to get dx but did in the end. She has a very good GP, and lives in Hampshire area so she was able to receive all the trimmings obviously due to her postcode. I would not be happy for my OH to go and see a Neuro at our local hospital, as it has a terrible reputation, and that's bad enough without the 3 month waiting time. Not only the long wait but at the end of it, there was even doubt that he would end up seeing a Neuro, but more than likely a member of his team or even a nurse. I am sorry to hear of your OH Dx, I don't know what PD with lewy's actually is? I have read about PD plus, may be that is the same thing. The only thing we can do is keep as positive as all the lovely PWP on here, they are really amazing, and have advised me so much. Keep strong, keep positive, love hols x