DaT scan


#1
I am please to say I have an appointment for a Dat scan 2 ND November. My problems started over a year ago and symptoms have progressed, I had bladder problem with nerve pain in my arms then my hair started falling out I started to sweat I would be soaked, I then started with a right hand tremor then one day I froze and could not move off the spot this happens a few times then I had trouble walking my legs were like rubber I now have a wide gait, I cannot sleep and have fatigue. I saw neurologist who told me I did not have P D or essential tremors I was referred to Professor Edward but the wait would 10 months. I decide to go and see a neurologist private his bedside manner was awful he examined me and said he would do more blood tests and DaT scan and go back in 4 weeks and that Parkinson could not be rule out, as I leave I froze and could not move the neurologist told me to stop panicking and count to 3 and move I could not move, I came out of the room and sobbed I have been very positive this made me angry, I will get my results but cannot have treatment at Benenden . I am full of hope I will find out what is causing my problems and see what happening. I cannot go out by myself as I am frighten of falling and the neurologist told me not to drive. I post a update when I have news.

#2

PJ

So sorry to hear about your dreadful experience.  It's bad enough having to put up with what you have got'

I attend the local hospital and have not yet seen a neurologist and have been diagnosed for over two years.  She is very nice and totally convinced that I do have Parkinsons but she says she has been known to be wrong.  I have never had a scan and five months ago requested a second opinion with a neurologist and got a referral from the Gp.  I have had about half a dozen letters and telephone calls with the NHS.  They have accused me of non attendance for appointments, cancelled me off the list etc despite the fact that i have never been offered one appointment.  My Gp has now sent three referals to the NHS and has now sent one to the Neurologist/secretary - so with a bit of luck I may get one.

In the meantime I hope that your symptoms are settling down and that you are feeling a bit better.

 


#3
Astoriasis new flower, So sorry you are having lots of problems with appointments did you know each hospital has a feed back page if you write it someone will get intouch with you. The Neurologist I saw I read the feed back on the hospital page it did make good reading. I have had a scan plus a MRI they found four things going on in my brain I have plaque gray matter has shrunk problems with fluid and white spots. I got a letter today from neurologist he said I have fix stareon my face. For the last three days I have had a tightness around my waist and in my stomach like I have done a lot of sit up like cramp it very painful. What part of the Country are you in I am in Kent. My Aunt and Uncle both had parkinson I know they say it does not run in family's. I wish you good luck keep in touch love to know how you go.

#4
Had my DaT scan today all went well. The staff at Canterbury were amazing and I did not have to wait to be seen. I am just waiting to go back and see consultant and get results if I do have PD I will be relieved I just want a diagnosis and I can get back on track and get some help.

#5

Hoorah I have now got a date to attend a neurologist in November.  Can't believe it.  It has taken five months and three referrals from the gp.  I will let you know what happens when I attend.  And also this week have had an appointment to have my hip replacement - oh, happy days.  Seriously it will be good to have the confirmation through investigations exactly what I do have or maybe .........  Well, we shall see.  Curiosity may well kill the cat!  The one thing that I am confident about is that once I get over the surgery for the new hip, it will be great - no constant nagging pain!  The stare on your face is one of the things that Parkinsons brings with it - you will not be alone.  Join me!  I dont have the freezing you experience, have the sweats, tremors and fatique.  I very often go to bed in the afternoon, have a read and doze off usually for three quarters of an hour - I get my husband to wake me.  Most of the time, I put Parkies on the back burner of my stove and enjoy life as much as I can.  If you allow yourself i.e ME the privilege of wallowing in self pity it destroys you.  Well, that's my philosophy for me and i think it works but we are all different.  Interesting what you say about your auntie and uncle.  There is no Parkinsons in my family at all.  And I have another genetic condition but none of my three sisters, three brothers or mother and father had it.  Statistically you would have thought one of my siblings would have.  I think the odds were 50 -50

All the best, hoping you are feeling better.

Nowhere near Kent - Merseyside Area.


#6
Hi Astoriasis I am so please that you are getting your Dat scan, I hope you are feeling up beat. Let me know how you go on love to hear all your news. I go on the 21St November for my results so not long to go I cannot wait. I have not been sleeping and when I get up and try do jobs I am sweating my heart races and I am puffing and panting, I had cramps in my stomach like I done 50 sit ups today I am feeling much better. Sending you a hug and good luck.

#7

 

 

          Hello  PJ

                               You Sir   display all  the  symptoms  of  PD   and the  treatment  you  have received , has  been  shocking, however you  are  on  the right track now  PJ so  all  the  very  best  for  the future.

                             FED


#8
Hi Fed, thank you for your reply. My problem is if I go on Monday and the consultant says I don't have PD I don't know what I will do. I do have appointment in London at St George's in April. Over the last few weeks my heart has been racing and I sweat buckets and puff and pant when I do any jobs, I don't know what going on. I am very positive about the future. Take care PJ. (Paulette)

#9

coolHello PJ

                         O reading your first  post dear  friend you exhibit all the symptoms of Parkinsonism for as you will  know Parkinsons is  just  a handy  and recognisable group name covering the  many  and  varied descriptions of BLACKHEART ,,thats  my  description of  it,, I have  others but  I CANT list them  here  or  I would  be banned for  life, and  you will also know  by  reading  the  posts  on   the PDF  every reply is variable  and   similar but different also,,  see  PJ clear as  mud,,  so if  the  visit on  Monday does not come up with  the PD diagnostic, or  PDism,and treat  you  accordingly  ask  for  a  second  opinion,  or  as  you  say  you have another visit in April  to  St Georges London surely  they will give  what  is plainly obviously  BLACKHEART  PD., please  inform me of the results,I will be thinking  of  you, oh  also  if as  I  believe it  is  PD fear  not  there  are  many  and  varied   drugs  available   to  help  you battle  this  awful  disease  and   you certainly  seem  confident   and  up  for  it  (the  battle) plus  the  support  available  on  this  forum is  endless so go  for   it  girl,  my  e  mail  is  available  if  you   need  a  more extensive description of keeping  parky  in   his  cage.

                                             Kindest  Regards  FED  exlike

ps  appologies   for  mistaking  your  gender Paulette , nice name  by  the  way


#10
Hi Fedexlike, Thank you so much for your reply. Cannot wait for my appointment tomorrow. I would love to have someone to talk to that has Parkinson or who has knowledge. I love life and all I am asking for is a diagnosis so I can move on not much to ask. I don't know anything about medication. I have put weight on so I have now started eating good food, no bread potatoes cake biscuits chocolate or sweets or process foods I have lost 7 pounds this week feel amazing and sleeping better so thrilled. I will let you know how I get on at Benenden Hospital I worked as a nurse at this hospital many years ago. Take care thank you so much PJ. Paulette

#11
I am back from hospital saw the neurologist he said my Dat scan was normal on the report but said its not normal and he is going to go back to them and challeng it. I am to start on medication and go back in 10 week he would still not say I had PD but said he more yes than no. I have about 10 symptoms what else can it been my own mind I have PD. I feeling positive and up beat will get myself fit and enjoy life. PJ

#12

What can I say PJ that would give you the answer that you want so much, except to say that I have been waiting for an appointment with a neurolgist since May but at last I have one in December.  I've almost lost the will to live (joking) but it is so frustrating.  I think if I then I experience what you have - it would do my head in.  But your're doing the right thing, get on with living and if you eventually do get a diagnosis remember it is a different journey for each of us. It is a second opinion I seek.  My diagnosis has been made on the signs and symptoms I present.  This was three years ago and I did make a bucket wish and since then I have done a world cruise, written two books and basically enjoy life as much as I can. By the way, I worked as a nurse for forty years and I sometimes think we have seen so much in out lives and cared for the sick, that in some ways, I feel it is an injustice to labour me with Parkinsons! in my later years but we cant pick and choose.  I always think of what I was told as a child, 'You are never given a cross that you cannot bear' but it aint much good when you have lost the way!

Regards

Astoriasis

Ps Please allow for my sardonic nothern humour!


#13
Hi Astoriasis, well I worked as nurse then when on to do Maternity Nurse I also have northern accent how about that. I am waiting to go back to GP and I go to St George's in April to a movement clinic so see what happens. I had a couple of days of fatigue yesterday I forced my self out I had to keep stopping as my like we're so tired but I did it. Good luck with your appointment please let me know how you go on. Thinking of you take care PJ (Paulette)

#14


HI PJ


Yes I know what you mean about the tiredness.  Most afternoons I go and have a lie down.  I feel as if a black cloud has descended on me, not depression profound tiredness - I know what you mean!  I do find that if I listen to my body and have that rest it does make me feel a lot better throughout the rest of the day and I am able to get more out of my day.


Did you like midwifery?

It was not my favourite form of nursing but it suited me when the children were smaller and we had a really good matron.


Look after yourself and look forward to hearing from you

Astoriasis


#15
Hi Astoriasis Thank you so much for your ply. I did like Maternity I worked for people after baby were born travel the world it was a wonderful job. I did not take care of my health them had problems with my kidneys. I am waiting to start medication. Today has been a sofa day my legs just would do what I want never mind another day tomorrow. Take good care PJ

#16

Hi PJ


sorry to hear about your health problems.  I can hear mentally my mother who has been dead for some fourteen years, 'Well it's a bugger and indeed it is'  If it's not one thing it's another.  i was attending for an orthopaedic appointment for a hip referral.  They hadnt got the Xrays I had had and said that the gp had done the referral for my knee; only to be told by the orthopeadic surgeon that my signs and symptoms were a- typical because the pain was in my hip and leg and not in the groin.  He thought that the pain could have been from my back which had signs of arthritis too.  So what with arthritis in my hip, knee and back I thought I wouldnt tell him about the trouble with my shoulder - yes, it is a bugger!


;You start to wonder if you are a hypochondriac.  Ironically there is some research being undertaken about pain and  parkinsons.  They believe that people with parkinsons feel pain greater than those without it.  It will be interesting to see what their results are.


Hope you are feeling better


And you take care too

Astoriasis


#17
Astoriasis Thank you for your message. Yes your right about pain and PD, I have had a back operation which I had two years ago, like you I have hip and knee pain I think it's the way I walk. I have now started with a racing heart beat sweating and puffing and panting, I am having test tomorrow, it makes me so fatigued it's hard to do anything keep having to sit down, doctor think it due to PD. Still waiting for my medication will be next week. Take good care good luck with your appointments. P j

#18
Astoriasis Thank you for your message. Yes your right about pain and PD, I have had a back operation which I had two years ago, like you I have hip and knee pain I think it's the way I walk. I have now started with a racing heart beat sweating and puffing and panting, I am having test tomorrow, it makes me so fatigued it's hard to do anything keep having to sit down, doctor think it due to PD. Still waiting for my medication will be next week. Take good care good luck with your appointments. P j

#19

Hi Pj


Had the long awaited appointment with the professor who was willing to listen to me and was not arrogant.  He gave me a comprehensive examination and then told me that I fell between the  two stools of Parkinsons and Parkinsonism.  He said that Parkinsons can be diagnosed on just a physical examination and that a scan was expensive and unnecessary and he offered to keep me on if that was what I required.

Soooooo - I was a little disappointed because I really do not want to have Parkinsons.  I nursed too many people in the latter stages and have too many memories.  I think that I would rather the dreaded C than it.  The only other disease that I think is worse is motor neurone disease.  BUT, he did say it would not kill me and everyone has a different journey.  I decided to go back to the local team I attend.  They are accessible, listen and the person I see is a specialist in Parkinsons and operates a client led approach; which is good for me.

I also saw the local physio who told me that the diagnosis for Parkinsons is made on the presence of three signs or symptoms.  These can range from tremor, stiffness, slowness and difficulty of movement or things such as REM (Rapid Eye Movement when sleeping) i.e having vivid night mares, acting out your nightmares, tiredness, and reported memory problems, difficulty in thinking - So, I think you can see it was easy to diagnose me!  How about you?

how is the pain and the sweating, rapid pulse and shortness of breath?  I dont think this weather helps - do you?

Thinking of you

Warm regards

 Astoriasis  


#20
Astoriasis How disappointing I just dont understand why we cannot get a diagnosis. I amstill waiting for a letter from Neurologist, I rang the hospital but letter has not been done yet.. I had a heart monitor fitted for three days I only had one of my racing heart beats episode. I was fatigue I sleep most of the time. I have lost 5kg in weight I feel a bit better this week, I have cut out the rubbish and only eat fresh food. Ian taking vitamins also Gaba which someone recommended. I am sleeping so much better ten hours. I also read that a power plate excise is very good for the muscle so going buy off the well know auction site. I feel we are on our own so search the web for active. I found a article that sai Parkinson start in the gut and research is being done. So I am now taking probiotic once day found them in boots 2 billion in a tablet. I would give you my email but don't know how I would do it as I would love to chat more. I am on facebook under Paulette Whitelaw send me a message I will send one back. If I find anything that helps I will let you know. I am also on my Parkinson steam. Also through about trying CBD oil hemp oil so looking into it. I am sorry you have not got answers yet. Thinking of you sending big hug take care PJ