New diagnosis


#1

Hi All, 

I'm a 37 year old Mum of 3 who works full time in London.

For about 8 months I've been experiencing progressively worsening tremors in my hand, arm and leg, cogwheel rigidity in my arm and motor difficulties, which has affected my writing and typing. I was referred to a neurologist who after performing a few manouvers sent me for bloods, an MRI and then a DATscan.

I met with him for the results last Friday and he explained that whilst the copper in my blood and MRI were normal, the DATscan showed a reduced uptake of dopermine on the left hand side of my brain (presumably accounting for my right handed symtoms)...

He has started me on a Maldopa regime and has sent me for a slit lamp (?) eye test and 24 hr urine testing to rule out Wilsons syndrome (which he thinks unlikely as the bloods were normal).

I've been reading a little about Parkinsons and whilst there is so much information out there, I'm struggling to make sense of some of it and I'm hoping you may be able to help...

1: Is a DATscan conclusive of Parkinsons or Wilsons?

2: The consultant mentioned genetic testing (7 genes in total), how might this affect my treatment?

3: How long does it take for the Maldopa take to work (I'm on 62.5mg x 3 a day, with a review in Jan)?

4: What is the outlook for EOPD? Do things degenerate quickly/slowly? I've read conflicting reports...

5: Whats likely to happen now?!

I'm sure my Consultant gave me some answers to these questions but I was in shock at the time (not good for my tremor!) and not really taking anything he said in.

If anyone has any good advice/thoughts or has been through a similar experience I'd love to hear from them.

Best wishes

K xx


#2

Hi, I think I am right in saying there is no test for pd, they test for other things and it is a process of elimination.

I convince myself by saying early onset - slow progession, that is good enough for me.

Everybody reacts differently to drugs, I have tried some that did not work for me at all, but do not worry they have many different cocktails.

What next - well - head up, keep positive, carry on as normally as possible and take charge of your pd do not let it control you, you will not die from it and hopefully a cure will be available before too long!.

xx

 

 

.

 

 

 

 

 


#3

Hi Kerri,

I am karen I was told 18 months ago I have PD so I hope I can help you.

The data scan I am not sure about but your symptons do sound like PD the madopar dose your are on is low but effective, the progression will depende on your DNA. I am offically classed as early onset PD even though I was 47 when told, EOPD  progresses no different to norrman onset so don't panic. Just follow the advice of your consultant take your meds and my most srongly sugessted advice is make sure your GP is clued up on PD and only see that GP or one other as a back up to keep a close eye on your symptons and the progession. You could stay as you are for the next few years or advance no one can predict progression no matter what they say.Your continued treatment will depende on how you progress, which hospital are you under in London? As there is the UCL hospital in central london the specializes in PD you can contact your primary care agency for advice inregards to a referral.

I will be here for you no matter what so stay calm as stress is the worst thing for people with PD.

 

Best wishes Karen ( BettyBlue)


#4

Hi K,

Welcome, and I hope you are doing ok. I was diagnosed last August (when I was 33) - I can't really provide any answers, but have had a similar experience. I also had the MRI/blood tests/DATscan, and like you all came back normal except the DATscan, showing a reduced uptake of dopermine on the left side.

When I heard the news, my tremor went nuts! I realise now that any stress/anxiety/nerves etc makes my right arm/hand tremor (which isn't normally that obvious) much much worse.

I'm currently taking 1mg Azilect (rasagiline) a day, which I believe is more for slowing the progression that treating the symptoms.

Best wishes,

T


#5

Hi Kerrie

welcome to the forum

I was diagnosed with pd in August 2013 at 47 yrs old   in answer to your question about genetics and how will it affect your treatment , i am going through the genetic testing process  as both myself and my mother were diagnosed with parkinsons within a few weeks of each other i have had a test for the LRRK2  mutation which i believe is the most common  genetic mutation linked to pd , but that came back negative but my neurologist did ask me to speak to my children  and my mother to see if they were interested in pursuing further genetic testing  i go to see my neurologist next week and give him our decision and then he will refer us as a family for genetic testing , my neurologist did say that  the reults of the genetic tests does in no way change the treatment or management of parkinsons

As far as i know there is no conclusive test for parkinsons a datscan can indicate loss of dopamine which would suggest parkinsons , a datscan will not diagnose Wilsons disease , when i was diagnosed with pd i had a blood test  for wilsons disease

Madopar or any other pd drug can take a few weeks to start working but everyone is different and will experience different symptoms at varying degrees some people can manage on low doses of Levodopa while others need more frequent doses , 62.5mg is the usual starting dose your neurologist will change your dose if needed if you are not getting as much relief or experience wearing off between doses , i started on 3 x 125mg a day but now take 5x125mg a day at 3 hourly intervals you will find the correct dose and timings for you

I do not think progression is any quicker in eopd  as pd is a very individual illness  everyone will experience different symptoms ,

What next , well as terrific says keep positive , find the drug regime that works for you and when that kicks in you should start to feel better, above all give yourself time to come to terms with the diagnosis , yes there is a lot of conflicting information on the internet but i would advise ordering some literature from Parkinsons Uk it is very informative 

Best Wishes

Shelly x


#6

hi i was diagnosed sept this year, im 56 ,probable had for 4to 5 yrs.

i think important think is to realise nothing happens quickly...,asShelly 65 said. the drugs all start low and slow so you dont get side effects but that also means may not see improvement for awhile , you have to get upto the dose that suits you. im only just seeing improvement now .on requip xl 12 mg once aday and sinemst 125mg three times aday

exercise is good for the disease and your mood as well as your local support group.as in london might have young persons group.although older than you i still was told i had young onset . no group near me for younger, working people but joined the local group and although im only person still working everyone is v supportive and friendly , it helps to talk to others.

best wishes

k3


#7

Hi Kerrie im 52years old but was diagnosed 4yrs in may aged 48 was totally unexpected it was a DAT scan that confirmed it never mentioned wilsons .I also suffer from tremors in my left hand and stiffness /pain, im on Rasagiline,pramopexile,madopar.what seems to happen with me is medications help then when i get used to that dose symptoms gradually get worse again so instead of increasing just one tablet i was originally on he introduced the madopar which im on 4xday.i too worked full time until 2wks ago ive now took ill health retirement as couldn't manage any longer ,it does take a long time to come to terms with don't think i still have yet Hope things get sorted for you kerri  Best wishes x


#8

 Hi kerri,

Joining your local support group is a great idea i done it with the lincoln branch and although i am the youngest with PD I found the right kind of support because everyone who is a member has experienced PD by either having it or by caring for someone else, Just give them a ring first and have a chat to see what is happening at their next meeting. You can find them by the support group link on this website.

I also work full time and for our meeting's I am given time on 1 monday afternoon per month to attend. Your condition means your employer really cannot refuse you the time off. This is because its covered under the disabled act, your entitled to Personal Inderpendence Payment which is none income based. And if your walking is effected you are entitlled to apply for a blue badge (disabled badge). You need to be strong and sometimes fight with words to get your entitledments. I promise I will help in whatever way I can.

Take care BB xx

 


#9

hi ya

i was diagnosed oct 1st after a year of investigation

i had nerve conduction tests/mri/ copper test for wilsons, then dat scan which showed reduced uptake in both sides of my brain.

 i thought it might be the case as my tremor started originally on my left hand yr's ago and by the time i was diagnosed on both sides.

i starrteed in sinemet and then sinemet+ which was generic but not good , now on madopar which has been better for me although i still have plenty of problems to deal with..

All i have too add too help you is it might be beneficial for you too see a Parkinsons Nurse, i've seen several different Gp's and they vary in knowledge some very good and some clueless.


#10

Kerrie77,

Since your first post you have had quite a lot of replys and support from other members of the forum I understand your a busy mum of three and you work full time, but no responce at all to any of your replys, considering the very confused and worried tone of your first post your silence is surprising. Support work's but it needs to be reponded to silence get's returned with silence !!!!!!!!!!!!!!!!!


#11

Hi all my name is alan and I have only just been diagnosed so its all a bit new. I would like to get to know more as I go on. My biggest worry ATM is losing my driving license. Thanks


#12

Try not to worry about anything, it isnt good for your health! Keep driving, be confident and most of all take control of your pd don't let it take charge of you. Enjoy your Christmas and be merry. xx

 


#13
Hi I've just sent my licence in again to be reviewed this is the second time have to send them back every 3 years was diagnosed 4 yrs ago this coming may they ask u to fill in a form then they send to your consultant for information about your symptoms I think unless u having problems with suddenly falling to sleep or medication making u drozy u should be OK it is a worry fingers crossed I get mine renewed again and good luck best wishes .

#14

Beau.  You need to talk your concerns through with your consultant and PD nurse.  Find out what drugs can be used to address the PD symptoms that YOU feel have the greatest affect on your driving.  Mine was tremor control so my hand could hold the wheel steady on a straight road.

Tell the DVLA by using their form.  PD is a mandatory notification within a reasonable timeframe (14 days really or sooner).  They will write to you saying they are making enquiries of your medical contacts you've provided.  Make sure they issue you with a 'fit to drive while we're making enquiries letter, it's free but you may need to ask for it.

Call your insurance company (14 days or sooner) tell them you've been diagnosed, have told the DVLA and are awaiting their response.  The cost of my insurance was not affected.  Make it clear you have not been told you must stop driving (unless of course you have, then it's a whole different process) and that you will contact them once the DVLA have replied.

The most likely outcome is a visit to your GP and a time and group restricted (no minibuses etc.) new licence.  This is so you are kept under review.  Depending on the severity and controlability of your symptoms, some sort of test while in the car may be required.

 

Two points on meds in general for newbies and the rest of us.

1. Your PD is at a personal stage for you.  The meds combo you require needs to be adjusted for you so it's essential you feedback on how they are working so they can be tweaked.

2. As your PD progresses your meds need change.  It is NOT that specific drugs only work for X years so 'delay starting them so they can be held in reserve'.  The drugs work on the symptoms you have, once your PD has progressed beyond a specific drug's capabilities, it won't work for you.  Don't suffer symptoms that can be addressed now.  Feeling the best you can and being able to exercise as a result can make PD time appear to move more slowly so you retain 'normality' for longer.

 

Finally, balance my feedback with that from others, you need to become the expert on YOUR PD.  

 


#15

Hi Alan,

I know of no reason or persons who have lost their driving licence when first told they have parkinsons, it would have to be quite advanced for that to happen.

Have you been informed as to what stage you are at ? generally it is diagnosed at stage 2.


#16

For those newly diagnosed --

I know that you have already received excellent advice from others here.  I'd like to add a bit of my PD story, because it is one of the more hopeful histories.  My recommendations are only three, all of which you have heard before:  exercise regularly, keep a positive outlook, and try to find the best combination and dosages of meds for you.

My diagnosis came at age 56.  I had common symptoms, such as an altered gait, shrinking handwriting, occasional tremor, lack of coordination -- all worse on the right side.  With hindsight, I know that my first symptoms began at least five years prior to diagnosis.  As soon as I started on meds, the symptoms were completely eliminated.  Since then, I have changed my dosages and added more meds.  But after 18 years since those initial symptms, I am still in the first stage of the disease!  Parkinson's can progress very, very slowly in some cases, so think optimistically.  You may also be fortunate in that regard.

J


#17

Hi beau brummie, welcome to the forum,

 Im quite new to all this aswell so were in the same boat. i got told last july and im still coming to terms with it all. Just to answer your worry, You shouldn't lose your driving licence unless you are very advanced Parkinsons or have particular problems. I have had mine reduced so i can only drive a car now and nothing bigger but this is because i loose my grip alot and have servere stiffnees on my right side. I 'm a brummy but i live in Cumbria now and i love it up here. It's nice to find another Brummy. Hope this helps, if you ever fancy a chat just mail me. 

 Chop Chop