Not sure if I have been diagnosed or not


#1
Hi,

I'm a 59 year old male. December last year my GP refered me to
a consulant neurologist after I started experiencing symptoms
that could be related to PD.

A recent DaT scan shows I have a deficiency in dopamine.

In a letter, my consultant has recommended I make an appointment with my GP
to start me on dopamine replacement.

Is this how things are supposed to work? I had expected my consultant
to suggest what treatment I receive.

Also, is there any point in this process where I can say that I
have been diagnosed with PD ? This is important for travel insurance
considerations, as they seem to point blank refuse insurance if I am
under a consultant for an "undiagnosed" condition

Thanks in advance

Mike

#2
Sounds strange to me but our experience was the Gp said I think you have Parkinsons . Referred Us to a consultant who dealt with Parkinson's in the care of the elderly clinic , (in our case ) Don't know where the younger ones GO ????

We waited - long 2 months and he agreed and gave us a prescription for Sinemet and told us to come back in 4 months . We live in S Wales.

#3
Hi
Sorry to say you have the indications of PD and if your neuro is wanting you to start sinemet then he has diagnosed you with PD or the letter may say Parkinsonism. The letter you received will be a copy of what your GP received. Usually your GP writes the script for the drugs as advised by the specialist.
The question for you is whether you want to start treatment immediately and you may find it helpful to discuss this with your GP or a nurse on the PUK helpline. I can also highly recommend the publications available free through PUK. Do keep asking questions here, there is a wealth of knowledge on the forum.

#4
I got my Aussie specialist to give me a copy of the letter he sent to my GP. In my case he stated that I was diagnosed with PD.

I plan to use this letter if there is a question of my diagnosis, such as (in my case) hooking into the US health system, but it would be suitable for travel insurance, I would think.

I think it would be good to know what the specialist said to the GP anyway. :wink:

BTW, I would expect the specialist to be writing scripts for the meds. That is what happened in my case. My GP hasn’t been involved in my treatment.

Let us know how you get on.

#5
Mjs just to clarify, if you live in Britain the GP holds the budget for your meds so writes the script, there are exceptions. In USA and elsewhere funding arrangements are different.

#6
Thanks to all who responded... fyi I am a UK resident.

Went to see GP yesterday. She is going to ask the neuro
for recommendations for starting me on an appropriate drug
regime as she feels she could do with some help choosing
between the various options.

My next consult with the neuro is not until end of September
but I am trying to get that brought forward.

As I understand it, there is no urgency in starting on dopamene
replacement and there may actually be good reasons for delaying
it. Is that true?

Thanks again, Mike

#7
Mike
Beginning meds is highly individual as you will see from past posts. I am for taking meds when the condition is interfering too much in your life. Most people seem to start in the first or second year of diagnosis. It takes time (months) to really adjust to meds I think.

How strange your specialist didn't advise which meds to go on. That is very unusual. You may like to check out his area of speciality on the web. It is good to go to one who specialises in movement disorders if you can.

#8

I've been treated for early signs of Parkinson's since I saw the Consultant in June.  I am 53.  I saw him late April and he said he didn't think I had PD and then in June he said he thought I did have it.  In April he told me I needed to increase my Seratonin levels and he told me to take Prozac. I took it for 20 days then came off it. They then wanted me to take Sertraline but I didn't like the common side effects of it so didn't take it. A friend of mine told me she'd taken 5HTP to boost her Seratonini levels and it had worked so I tried it but it didn't work for me so I came off it.

When I saw Consultant in June he suggested I tried a low dose Levadopa tablet.

With both tablets he said it would either work or not work and not do me any harm if it didn't. 

Both times I had to wait for Consutant to write to my GP explaining what he wanted me to take.

I started Sinemet 12.5/50 on 12th July and have been on his suggested dose for about a month, that is 2tablets 3 x daily.  I've seen the Parkinson's Nurse on 3rd Sept who explained that I had to take 75mg of Cardidopa in order for the medication to work.

I've not felt good since I've been on Sinemet and I wonder if anyone else has had similar experience.. I'm seeing Consultant a week today.


#9

Where abouts in the uk do you live? Originally I was looked after at Frenchay although my postcode was Somerset. I got my diagnosis but had a similar situation of having no idea of what was to happen next and had then received a letter to say they Were signing me off... I hoped that it had all been a bad dream and that I didn't have this diagnosis after all. unfortunately it wasnt and I'm still facing life with PD. Thankfully I am under the care of the RUH and started Medopar , physio etc ... I have a fabulous network of consultant, GP, PD nurse & physio. My recommendation would to be to push for a Pd nurse who can help you obtain good, positive care. Xx


#10

I'm down in the new forest and thankfully have a very nice Parkinson's Nurse. I saw her on Tuesday and she told me I won't be seeing my Consultant tomorrow as he won't be there. But I don't mind as I think it'll be good to see someone else. The nurse says my medication is working and says I must do more to boost my energy levels. I'm going to the New Forest group meeting next Thursday. I went to my first one in September.

I'm going to ask person I see tomorrow if I have got PD rather than just being treated for early signs of PD. My nurse thinks I have it and I feel she would know as she's dealing with sufferers all the time.


#11

I saw a different Dr on Friday. After several questions and examinations she said she thought the best thing would be for me to have a Dat Scan which would confirm if I had PD 'tendencies' (not a word she used).

I'm wondering if other people can tell me about their experiences with Dat Scans as I know they introduce radioactivity to the body. My husband is coming with me and we're hoping to go there by train and bus. Will I be ok to do that?

I feel it's a good idea to have the Dat Scan as hopefully I'll find out if I've got PD or not.

The Dr I saw said the other Consultant I saw in April and June doesn't do Dat Scans but they got on very well.

At the moment I still haven't actually been diagnosed.

Any help people can give me will be appreciated. 


#12

Hi Chubber

 

Don't really know what a Dat Scan is, I had an MRI head scan (is that the same thing) to find out if I had PD, if it is the same thing I had no problems whatsoever.

Hope you get on well, good luck


#13

Hello shefinn! Thanks for your msg.

I've had an MRI headscan and a CT headscan but not a DatScan. Not really sure but think it has radioactive injection which shows dopamine in the brain and that then tells them if I have PD or not. It's because I'm not sure that I'm asking on here.

thanks for replying to me.

Chubber


#14

Hi Chubber

 

Thanks for replying! Pretty new to the forum, didn't know if I was doing the right thing to get my messages through, also I am now wiser at knowing what a Dat Scan is, thanks for that! I've just started taking meds prescribed in August, ropinirole or requip XL slow release. Put off taking meds because of side effects,but wished I had started on them twelve months ago, feeling loads better.

 

Hope you do well


#15

Hello shefinn!

Like you, I'm new to this forum and wasn't sure I was doing things right. Nice to hear back from you. I don't know if what I said about the DatScan was right. It's just what I think it is.

I'm on low dose Sinemet and don't feel good on it. Think they're doing the DatScan to make sure I'm suffering from PD. If so I think they'll have to change what I'm on. I've been off work since Xmas and it took til June before they said they thought I had PD.

We have a very good PD Nurse and I've found her really helpful.

I'm trying to do more, mainly gardening but am finding it hard.

I wonder if anyone else will join us in this 'chat'.

Thanks again for replying.

Chubber


#16

Hi again Chubber

Sorry to hear your not feeling too good on sinemet, I was offered that but decided on ropinirol to start off. Hope they soon sort you out.

 

I am confused  as to how well I am doing at the moment and how other people on the forum are not, plus all the meds they take in conjunction to my one 4mg a day tablet. I was diagnosed approx three and a half years ago, and I have kept going until as I said I started on meds this year through necessity and feel fine(touch wood)

 

 

The only way I can think that is why is because there must be different strains of PD or indeed if PD effects people in so many different ways, wonder if you or anyone else knows. You must be suffering yourself if you have not been to work since last Christmas. What are your symptoms? I have seen my consultant three times and have not even met or even approached my PD nurse. I feel quite lucky in the fact that I am still able to work also though I have been put on lighter duties.

 


#17

Hello shefinn!

Thanks for replying. Think it's just the two of us on this forum!

I work at a wholesale nursery and was working 7hrs a day. It was quite a physical job and we worked up to13th December, we had the Xmas meal and a local pub at which I was apparently a bit strange.

We had 2 weeks off and over Xmas I had flu,started on Boxing Day. Then when it was time to go back to work I just didn't have the energy to go back and went to Doctor on 9th Jan I think it was. She did various tests and said she would refer me to a Neurologist as she could tell I wasn't right.

Over the next few months I saw two different Consultants and had a CT scan, then an MRI scan and then I was referred to a Neurologist who specialised in PD. I first saw him in April when he suggested I needed to boost my Seratonin levels. So my GP put me on Prozac which I took for 20 days then felt so awful I came off them and was prescribed Sertraline but when I got them two very common side effects were fatigue and sleepiness which were 2things I was trying to get rid of so I didn't take them but took some 5HTP tablets from Holland & Barrett, recommended by a friend I bumped into. She actually had a menopausal problem which I realised was different to mine. My sister-in-law contacted me and told me she'd been prescribed Sertraline and I told her about 5HTP and she took it and it worked. Hers was also a menopausal problem. 5HTP didn't work for me. I had a hysterectomy 6 years ago and am not on HRT.

U asked what my symptoms were and it's basically having no energy to do things and feeling tired all the time.

I started taking Sinemet 12.5mg/50mg on about 12th July and built it up to 2tablets 3times a day with the local PD Nurse's help; she told me I needed to take 75mg of the first thing Carbidopa for Sinemet to work. I got up to the full dose about 1st week in September. Then I started gagging soon after taking the tablets so the PD Nurse told me to take an anti-sickness tablet for a while as my brain thought the Sinemet was poison and was trying to get rid of it.

That brings me right up to date. I saw Consultant on 11th October and it was she who suggested I went for a DatScan. When I saw the PD nurse at the New Forest PD mtg she said reason why one I saw on Friday referred me was because she was a Physican and not a Consultant specialising in PD.

Sorry to have gone on Shefinn but wanted to give u the full story. I'm so glad u have been ok so far. They do say everyone is different, don't they. Thanks for replying again.

Chubber


#18

Hi Chubber

 

How are things with you are you any closer to finding out whether or not you have PD for definate?

Any sign of an appointment coming through to put you out of your misery?? Then you can start putting your life into prospective and come to terms with what you have and perhaps get the right meds to make you feel a little better. Come and join the club!  big grin

 


#19

Hello shefinn!

Sorry it's taken me a while to reply.

I'm just waiting for the appointment for the DatScan. I feel I should know for sure then if I have PD or not. I had hoped to hear from others who had had a DatScan would contact me but it seems ur the only person who is talking to me. I really appreciate you talking to me shefinn as I don't feel alone when u talk to me.

I've read lots of people's stories and realise if I have got PD there's a lot to cope with and I realise it's going to be fellow sufferers that'll help me through it.

Thanks again for keeping in touch

Chubber


#20

Hi Chubber,

                 I had a datscan last year to confirm a diagnosis of likely P D.My GP started me on Madapor as I had to wait 4 months to see the neurologist,when I did eventually see the neurologist she was quite surprised at this however she did agree at the first consultation that it was likely P D.Before the datscan I had an MRI scan and as this was ok then the datscan,which did confirm the diagnosis,The datscan is painless,it involves an injection in your arm and hours later you go into the machine I think for roughly 20 minutes.

              I am 72 years old and definitely had the illness for at least a year maybe 2 years before I was diagnosed,I knew a difference within 2 weeks of starting Madapor,initially I was on 62.5 three times a day,I am now on gthe higher pill of 125 Madapor 3 times a day and 125 of the controlled released at night.In May the consultant put me on selegeline, I am now under the"Care of the Elderly"as I  am over 70.I live in Scotland,and the consultant i am now under specialises in Parkinsons,there is also a Parkinson Nurse who we can contact at any time,also Physiotherapy and Occupationalist Therapists are available.

      I  certainly have no regrets starting on Madapor,hope this helps.

      Anne