Results?


#1

Hi dear friends I am back.

Yesterday I received a copy of a letter my Neurologist had written to my GP this week. (I ask for all copies of letters)  The letter says that my MRI head scan with contrast was normal. The DaTscan also reported normal and she will see me for the app made for end of July.

This has left me in a real turmoil now, as she said I had early signs of PD, so what is wrong with me.

What should I do now?.......

Just needed to chat with someone .....thinking about seeing my GP but really he cannot help me and another 11 weeks is a LONG time. My husband thinks it is good news but I still have rigidity in my left foot, balance is poor and muscle weakness , insomnia and dropped shoulder which aches at times!!

Lynne


#2

Hi there, must be a really confusing time for you....Dr's!!!  they send these letters out and leave you waiting without realising that the time inbetween is then filled with ??????????

Don't forget about the PUK helpline - you can talk to a PD nurse. Going to see you GP would hopefully be helpful. The letters get sent out - but  GP's don't call to say 'hey! let's chat about this'- but if you make an appointment, you give yourself the chance to talk it through with the person meant to be the centre of your healthcare...... 

Good luckand take care,

Keld

 


#3

Hi na na 

husband s  right  take care  

Ian xx


#4

Hi retired nana,

Waiting is really hard. Is your neurologist a pd specialist? I had my datscan a week ago buT dont see my specialist til end of June. When he siad he was going to referred me for datscan I asked what will he do if nothing shows up. Ive had a lot of side issues and dead ends on my journey. He said theres def something wrong and he would have a treatment plan whatever the results. If you have a good relationship with your gp discuss it with them but you might find that they are also waiting for the next move from the neuro. One thing I have learnt over the last few yeare is that you have to balance patience with persistance andI still havent got it balanced right!  you will probably find your neuro is already got plan B in mind and if it is early days it just might not be showing up in scan.

Take care and try not to let the waiting get you down.

Porthos


#5

Good morning Lynn,

I hope you inspite of your concerns are well & enjoying the bank holiday weekend. The weather is so unsettled!.

I have read your post & do feel for you & understand. It is a concern when your unsure about the future of your health, I guess all you can do is wait & see how things go by taking each day as it comes. It is encouraging news that both scans have shown up clear results. I don't know much about pd still even though I have read a lot & spoken to people about it, all I do know is that some of us experience the same symptoms, some have different ones. Just as some people's pd progresses slower or faster then others. 

I saw  my consultant 2weeks ago & I was taken aback a bit when he said to me, You seem to be doing well, I may have got it wrong & you may not have pd!!! I was a little surprised when he said that as I thought "i've been on pd medication now over a year, so I hope you haven't got it wrong!!" He went on to say i'm pretty sure you do have it, infact i'm almost certain you do, because your balance has improved along with the other test since being on the medication, so that confirms to me you do have it! He said he thinks i've got Non motor symptoms parkinson's? I must admit I would myself feel a lot happier if I had been offered a Datscan as i've been told that's the only scan that can confirm for sure that you do have it. I'm still 2weeks on surprised that after him saying to me I could be wrong. (these things can happen) but I don't think I am, infact i'm almost certain i'm not I would have thought a Datscan would surely have been offered to me, but it hasn't!! 

Ever since i've been dx which was Christmas Eve 2014 i've had people say to me I don't think his dx is correct, but at the same time I do know I certainly do have a lot of health problems. My balance was bad (is better now since taking the pd medication, although some days its still bad. I do have muscle weakness in my arms & hands especially. I get very tired quickly, & recently very breathless too. I have trouble swallowing & a very dry mouth, so much so that my lips dry out, & it wakes me up most nights. I don't sleep well, get very depressed. I get muddled sometimes when talking. I just know my body & mind has changed, so I feel I do have it, but like you its worrying when you have feelings of uncertainty & your Consultant comments that he may have miss dx it! & also in my case a lot of people around me are not being overly helpful or supportive. It makes you think well if its not pd its dam well something as I know my own body & head & something is sure not right.

Yesterday I went into town to do some shopping & my god did I come over bad in M&S at the cash out, I had to ask for help & just get a taxi home. When I came in I just threw the shopping down, got some water & had to lay down on the bed The pain in my head was awful, I was so cold, felt so weak & just felt I couldn't do anything or cope with the day. I often get these days. & often after eating feel really ill, I feel like i'm drifting into an almost coma like sleep, & am so nausea & weak. Again it take me off my feet for a while. So i'm a bit like you Lynn, I know something is wrong, & I do think I do have pd, because of all my symptoms, but I also worry about it & do wonder why i've not been offered a Datscan. So many people on here seem to have.

You may have the very early signs of it,& its not showing up yet on the scans. I would wait until July, it may seem a long time to wait but it will soon come around. Once you see the Consultant or Dr again see how you feel then and hear what they say. Things may be a lot clearer by then.

I was told that pd can be a part of you for a long time before it actually starts to really affect you, the symptoms are so small & make little difference that you just don't notice it or go to a gp, or you do as I did but they don't automatically think of pd, they do other test for other things. Its only once the pd has reached a certain stage that it's possible for the medical profession to be clear to dx it.  When I first became really unwell it was about 5years ago, & I lost a stone in 4weeks, for no apparent reason. I was also very weak with constant nausea & had bowel changes & trouble digesting food. I had months of test, but I was told they were concerned it was some form of Cancer. It was only when I saw my gp one day & fell in her surgery & was very confused that she made an appointment for me to see a Neuro Consultant, I waited 6months for that, & I guess I was with him 25 30 mins at most & he dx straight away there & then pd & put me straight on medication. 

Since then i've had to see chiropractors for bad back pain etc, & they have all said they don't think I have pd??. (they mean well, but none are prepared to support their remarks or concerns & write to my gp, it just unsettles me, which like you, you don't need.

I hope my ranting on has helped you a little Lynn. There are people on here who know far more then I do & i'm sure can advise you better. I would just say don't worry, (easier said I know)! Try not to get too stressed as that makes the, or any condition worse. & just wait for your next appointment. 

My Consultant told me that there is a very thin line between pd & some other illness's so I guess it is hard for them to dx unless you are showing lots of the symptoms, which you obviously aren't. I think if it was me though i'd be very encouraged by them scan results you have had.

Take care Lynn, try to have a good relaxing Sunday. Say's she stressed out & so not in a good place at the moment. This site & the people on it are so friendly, understanding & helpful. I often think of things they have written or said to me & it helps me through days like i'm having lately. 

Best wishes. 


#6

Hi Porthos, Keid, & Ian,

Just read your advice to Nana, & think your all right. The PD nurses are really helpful & so reassuring too. I have often felt so much better after speaking with them.

I think your all right in what you say, I have taken it on board too as i'm very depressed & screwed up lately.  

I hope you all enjoy your Bank holiday weekend.x 


#7

Hi Autumn  

you say you took our advise well here's some give the dr a hard time to get what you want when you can't get dr pester p nurse don't stop till you get where you want to be but to be fair waiting times are long , I mean this in the nicest way cheer up bitch ! If you don't start swimming you'll sink  . Love you now your smiling that's better 

Ian xx


#8

Hi Autumleaves,

How are you feeling today? I just wanted to remind you that we, Parkinson's UK and the Parkinson's UK forum community are here for you, so please do continue to count on us for emotional support or any type of practical help you may need, including discussing whether it would be a good idea to ask your GP for a datscan so you can feel more reassured. The helpline is open until 2PM today and it will reopen on Tuesday after the bank holiday from 9AM to 7PM, so don't hesitate to call us!

Also, have you explored support groups in your area? It would be worth checking to see what you can find near you, so you can see on a regular basis people who understand what you are going through. You can find support near you here: http://www.parkinsons.org.uk/local-support

I hope you are doing fine and enjoy the rest of the weekend without too much stress.

Best wishes,

Mara
(​Moderation team)

 

 

 


#9

Hello all - this is my first post with regards to Retired Nana's results
2 years ago a neuro told me she believed I had Parkinson's - she arranged for me to have a Datscan and advised me in the meantime to use the Parkinson's UK website to get any information I needed as she believed it was the most reliable. I was to get a follow up appointment at a later date to discuss treatment options.
After getting a letter a few months later to tell me my scan results came back normal and that this 'surprised' her, I literally never heard from her again.
At first elated with the result I quickly realised that none of my symptoms stopped just because the scan was normal. I decided however just to get on with it and can say I've never missed a day's work in over 2 years even though I continue to move so slowly and I am just physically and mentally exhausted all the time.
A few days ago I went to walk down a flight of stairs and my body completely froze. For about 10 to 15 seconds I just could not move - luckily a noise from somewhere distracted me and I was able to move a leg to go forward. The experience was so bizarre and frightening that I'm really still in shock.
I know I should revisit my GP to ask for another referral- but here's my contention - what if yet another scan reveals the same outcome.
Where does that leave people like me? ( and many others who look in on this site I am sure.)
Parkinson's awareness week has highlighted that many people are embarrassed and ashamed and hide their condition from others. Believe me I know how that feels -  because my body is letting me down and I have no medical explanation for it - I feel I cannot talk about or tell anyone just how I feel to be in this position. My family and my friends do not know anything because I am unable to tell them anything.
I'll continue to joke with colleagues about the perils of old age slowing me down - haha- etc etc and hopefully will be able to just go on. It really is all I can do.

Kind Regards to you all 


#10

Hi Corydoras,

I'm sorry to read about your experience, it does sound frightening to freeze on the stairs and it's understandable you're still in shock.

Unfortunately there is currently no conclusive test for Parkinson's, this information sheet explains about diagnosis which might be helpful: https://www.parkinsons.org.uk/content/diagnosing-parkinsons-information-sheet

You might also find it helpful to call our Helpline and speak to a nurse about your symptoms and what to do next.  Our Helpline number is 0808 800 0303, and our opening times are: Monday-Friday: 9am-7pm, Saturday: 10am-2pm.

Take care and let us know how you're getting on.

Best wishes,

Joanne

(Digital team) 


#11

HI Corydoras,

The freezing you described does sound like PD a dat scan can normally see this but does not always do so.

Personally I would call your neuro secretary and push for an appointment this is your right.

Hope this helps BB.


#12

Hello BB - I read your reply this morning -thank you for your advice.

After a wee bit of deliberation with myself I did exactly as you advised and phoned my neuro's secretary (after raking out my old letter- I got her direct number)
She confirmed I should have had a follow up appointment well over a year ago!!
I now have an appointment to be seen at the next clinic in 2 weeks time - to say I am astounded would be an understatement. I had it in my head that I would have a fight on my hands when really all I had to do was pick up a phone as you suggested.

I don't know what kind of answers I will get at the next assessment but I realise anything will better than continuing with this uncertainty

Kind regards 


#13

Thank you Joanne for your kind response - I have now taken some action to move myself forward (as per BB's advice) - and promise to let you know how I get on

Kind regards


#14

I have finally come back after my first posting starting this thread several weeks ago.

How lovely to read all your postings, especially Autumnleaves, thank you.

Corydoras so sorry that you haven't talked to your family. I am different and spoke to everyone whilst I was in shock at the initial mention of PD by my neuro.......perhaps too may but that is how I am!!.

Hi Ian (Idj) great to see you posting on my new thread....I am doing well and now only have 21/2 mths til my app but realise normal DaTscan is good/but... not letting the symptoms I now notice get to me so gym is big in my life ...after the red wine ;)

How are you doing

 

Lynne xxx


#15

Aye na na 

it was on the telly red wine is good for you ! Just make sure you've got plenty of it as prescribed by dr Ian ha ha  stay happy and keep smiling right attitude brings out best results am finally learning that myself as we have the otherhaves to think of your happy then there happy (well maybe ha ha ) you know what I mean though      

Take care Lynne xx


#16

Hi there ive been getting treated  for ET for the last year and a bit and have tried most and everything to help.Proparanol and primidone yes and no as they made me slow down and felt crap.

Anyway went to see neuro in Forthvalley Hospital and on 2 occasions that i meat him..last time was 3 weeks ago he said 100% that i didnt have pD and for my own reasureance that i go for a datscan which i did.

Last thurs my gp told me that the scan was abnormal and the neuro had written ' suggestive of a degenarative parkinsonian disorder and is not in with his assesment  of ET'

i only have postural and resting tremors, nowt else.im very fit at the gym most nights ...no slowness or muscle rigidity etc.

Iam concerned ..well anxiety is on rocket fuel as my tremors have increased tenfold due to the stress and worry of what he is going to tell me  nexdt Tues 31st may..2 days before we go on a holiday x

Im worried sick....i dont have PD i dont have the early symtoms.....low dopamine can be caused by a number of things.

Can you have essential tremor  and low dopamine???

What you think? folks help x


#17

Hi hazewell,

It's understandable you're worried about next week's phone call. 

Please know that you're more than welcome to give our helpline a ring. You'll be able to speak to one of our trained advisers, who include Parkinson's nurses. We of course will not be able to tell you what your doctor will tell you, but you would be able to discuss your worries and find out a bit more about possible symptoms for example.

You can contact the helpline on 0808 800 0303, Mondays to Fridays: 9am-7pm and Saturdays: 10am-2pm.

All the best,

Ilona (Moderation Team).


#18

Hi all,

The only thing I can add to this discussion is that my husband has never had any scan or tests or even been offered any - he was referred to a neurologist by the GP because of his symptoms (stiffness and loss of hand-writing skills) and the neurologist diagnosed PD after watching him walk up and down the room a few times!  He has been treated for PD by this same neurologist for going on 10 years now.  We have never had any reason to doubt the diagnosis, however informal it may have seemed.  

I would say if the symptoms persist, keep pressing for a diagnosis and treatment anyway.  

Stella

 


#19

yes i agree with stellam, a dat scan can see pd it is a ct and mri that cannot not all health authorities have hospitals with dat scanners and the general way we are dx fits with stellam's description


#20

Hello BB, Nana (Lynn), Keld, Idj (Ian), Porthos, Moderation, Corydoras, Joanne M, Hazewell, StellaM,.

I apologise for not being on line for so long, as I do value this website & the advice offered from other pd members & the Parkinson's staff. I have not unfortunately been around much as since I last spoke on here with you all i've received some very sad news about my brother. He became ill Christmas time & i've made a few trips back & forth to Cornwall to see him. Sadly I had the awful news i've so dreaded & he passed away May the 18th. 

It has left me devastated, I think I mentioned before this all come about in one of my post that I had been feeling quite down & lost too. I certainly do now! He would ring me 2 or 3 times a day & we would chat & laugh I will miss his calls so much.

I have also found that Parkinson's certainly becomes more difficult when under stress, as i've noticed several things seem to have become more of a struggle for me, I am hoping that once I become more settled & calmer my pd symptoms will start to hopefully go back to how things were before.

I hope none of you mind me sharing this news with you, but i've been so lonely & lost some days that it helps me to talk or say things like I am now. The funeral is Tuesday so tomorrow i'm off to Cornwall again & back Tuesday evening or Wednesday. I hope to be on more then as I do find it really helps to be in contact.

I really hope that all of you are doing well & your symptoms are not causing you to many problems & your all coping well. Its been a sunny day here today in Sussex, & the sun always seems to make the days brighter & easier to find things to smile about, I really hope its been a nice day for you all where ever you maybe.

Take care everyone & I hope to hear from you or be in touch again soon. My best wishes for you all. Autumn leaves.xx