New Diagnosis


#1

Hi All

I'm 44, from the UK

In Jan/Feb this year I was working in a very stressful job which became really unbearable and I noticed that I was shaking in my left hand and left leg and put the shaking down to stress. i walked out of the job, went home and went to see my doctor about the stress. My doctor signed me off work for a month.

About 6 weeks later i was back in work, in a less stressful job and everything was ok but i noticed that my left hand would shake every day. I went back to my doctor and reminded her that I had mentioned the shaking when I saw her 6 weeks earlier. My doctor referred me to a neurologist and I had my first appointment on the 21st July 2014.

I went along to the appointment and was given various movement tests to do and after this I was diagnosed with PD. I was prescribed Azilect 1mg and was told that I would be seen in about a month. I was also told that an appointment would be make to have a DAT scan to confirm the diagnosis and I went for that scan on 29th Aug 2014.

I now have a follow up appointment on 28th Sept 2014.

I also have a Genetic Medicine appointment on the 7th Oct 2014

The Azilect tablets don't seem to make any difference at all to my shaking. I mainly shake in my left hand and sometimes in my left leg.

My father had Parkinson's for a number of years which is why they want to do genetic tests I guess.

Anyway, that's pretty much where I am up to with things. I am still working, just about, as the shaking makes things very difficult for me at work. I do a lot of typing as part of my job and I'm finding it very difficult because my left hand refuses to co-operate.


#2

Hi John

Welcome to the forum

My story is pretty much the same has yours , i noticed shaking in my left hand about 5 years ago my gp put it down to anaemia so i was not to concerned , then about 2 years  ago i noticed i was getting a bit stiff and achy when i was getting out of bed and up from a chair  went back to my gp who again was not to concerned as i have a thyroid problem and she said you will get joint problems with a thyroid problem , then  i noticed my tremor had got worse  and i had a very painful left shoulder so i went back to my gp and asked her to check my thyroid  as i was shaking and suffering a lot of pain and stiffness, she said she did not think it was my thyroid but would test it anyway along with a few other tests, they came back ok so she said it could be something neurological and referred me to a neurologis in August last year t who after a few movement tests diagnosed pd, i was 47 yrs old when diagnosed  a few weeks after my diagnosis my mother was also diagnosed with pd , i have had a genetics test for the LRRK2  mutation which i do not have neurologist said lrrk2 was the most common but there are lots of other genes that are associated with  familial parkinsons   so my neurologist asked me at my last appointment if myself my mother and my children would go to see a genetics counseller  with a view to genetics testing i have spoken to my children who are keen to have the genetics test   when i go see him in December he will refer us


#3

Hi Shelly

Thanks for the reply. What drugs are you on at the moment and are they doing anything for you?

Do you take any supplements or have you changed your diet at all to try and help with PD?

John


#4

When i was diagnosed my neurologist started me on Azilect , went back 3 months later the Azilect did not do much for me so i was given a choice a dopamine agonist or Levodopa , the neurologist said Levodopa is the best drug for pd a  dopamine agonist wont work as well as Levodopa and he thought i would need Levodopa within a year  so i opted for the Levodopa , i started on 125mg Sinemet plus 3 times a day but i just did not get on with Sinemet i had awful vomiting and nausea and after 3 months i changed to Madopar  which i now take 125mg 5 times a day at 3 hourly intervals as i find after about two and a half hours my symptoms start to come back i feel pretty much ok on the dose i am on now i feel my symptoms are on a whole well controlled now , Not really had any bad side effects on Madopar  just the odd vivid dream i find the Azilect tend to cause me more problems than Madopar  dont really like the dizziness that i get with the Azilect , my mother takes Sinemet without any problems at all

No i don't take any supplements   and  not changed my diet as such but i have found a few things  now upset my stomach not sure if its the Levodopa or not but i now cannot tolerate drinking coca cola, but i do take my madopar on a empty stomach about half hour or so before meals as you will find a high protein diet will affect the way your body absorbs levodopa


#5
Hi john i was told june 2013 that i had pd i am very lucky with my drs. My GP sees me monthly and my PD dr every 3 months. I take L-dopa 62.5 mg x 3. And Pramipexole 700mg x 5 and that is just 4 the PD. The qty will only get higher as time goes by and i am only 48. Dont dispare go and c yr nuro and tell him the pills are not wrking. And insists he gives you somrthing else. Kindest regards BB. X

#6

I have been taking my 1mg Azilect at night before I go to bed. I have tried taking it in the morning but it seems to make no difference either way so I mainly take it at night. I also was not given any instructions other than take one a day.

I had an episode a couple of weeks ago where I was suffering with really bad dizziness and I just felt very ill. I never made any connection to the Azilect at the time. If it happens again then it could be that.

I also take some supplements after reading positive things on the Internet and having other people read articles in books/on the Internet and then tell me about it. I've never really been one to go down the vitamin/supplement route before but I guess when you have an illness that has no cure you are more willing to try anything.


#7

Hi John

I was diagnosed at the back end of last year age 41.

I have been taking Azilect 1mg once a day in the morning and Sinemet (Levodopa) 25/100mg 3 times a day. Not experienced any side effects as yet. I'm working full time in a busy job with 2 young children and the medication is at the moment controlling my symptoms relatively well particular if I exercise, I'm running, cycling and playing football on a regular basis and this seems to help as much as the medication. 

Speak to you soon.

James

 

   


#8

I used to take my Azilect at night i was advised by my pd nurse to take it in the morning  as i was experiencing   some weird  dreams i did switch it to the morning time but to be honest i do not feel that it is doing anything for me other than making me dizzy 


#9

Hi John,  Almost identical to you.  I was 55 was in such a stressful situation at work that I was forced to leave.  I suffered with every stress symptom, and then the pain in my shoulder started, with stiff-ness in my left hand.  I had an interview which involved a timed typing test.  My hand kept shaking!  That was two years ago.

My mother was dx aged 81.  I think, if it hadn't been for my problem at work, this might have laid dormant for a few more years.

Good news is  I am working, doing well, but typing can be a pain. I am in a new job, no-ones knows what an amazing typist I was - so I don't need to explain loss of skills.    I am affected in my left hand, left leg.  Can't push my foot into a shoe, have to put it on my hand.  Can walk well, but constant concentration to ensure I don't sound flat footed on one leg.

I am mainly relieved that I can remain completely positive at the moment.  Can honestly say it has not got me down at all.  Early days, long journey to go.

I am on Azilect - they don't do much - but as I haven't got any worse so far do not wish to stop.


#10

I have just got back from my appointment with the neurologist.

I have now been prescribed Madopar 62.5mg 3 times a day for 7 days and then I go on to Madopar 125mg 3 times a day

I have to keep taking the Azilect 1mg once a day as well.


#11

Madopar  ( Levodopa ) is the best treatment for pd  you should start to see a improvement in your symptoms one your up to full dose in a few weeks John


#12

I was diagnosed about 4 years ago and like you I noticed a tremor in my right hand after a stressful workout but put it down to overworking.  But, after The Trip from Hell (see my blog http://wpgchap.blogspot.ca) I got concerned so I was referred to a neurologist who told me I had early stage parkinson's and didn't need medication.  Fine for him to say, he wasn't shaking..  I went to a second neuro who prescribed amantadine and the agonist mirapex.  The tremors stopped almost immediately and I suffered no lasting side effect.  The second neuro referred me to a third neuro, a specialist at the Movement Disorder Clinic.  I see him periodically.  The last time I told him, although the drugs still worked, they didn't seem to last as long.  He decided that along with the amantadine and mirapex (both at max does)  I should add L-Dopa(Apo-levocarb 25 mg 3x daily) Now I experience no symptoms.  Even my voice and word finding abilities have returned, which the neuro doubted would happen.

It's a long road and we all face challenges along the way but I say "Stay positive, eat properly and exercise, exercise, exercise."  By the way, members of the tribe, I now use Trekking poles when I walk which allow  me to go faster with longer strides and even bound 4 soccer (football?) fields.  At 68, I feel like a 40 year old.

I try, and I hope I  am successful, to tell my story (www.wpgchap.blogspot.ca) with a little positive humour to balance the negativity that some people with or without PD, seem to let get to them. 

I have re-posted some earlier posts that seem to have disappeared from the list.

Doctor Oz said a couple of years ago that PD will be cured within 10 years.  I will go with that and give him a range of 10 - 15 years to make good on his prediction.  Until then, I am not going to let my condition get me down.

Best wishes to you


#13

Well said Wpg chap . I was feeling a bit negative today but you and many people like you on this forum give us inspiration . Thank you . I have been shopping today and struggled to walk along the mall . My right side didn't want to move and I had to ask my son to slow down . I was diagnosed recently and taking azilect only at the moment . This has made a difference to tremor in right arm but leg not much difference . Found it painful driving today . Seeing neuro on 6th so will have a chat to him about medication . Have not seen him since diagnosis . Pd nurse gave me the diagnosis as they couldn't give me earlier appt . She started me on azilect . Would have liked to have seen him but not possible and felt I needed to start on something . I have had problems for quite some time . I am working full time and finding this so frustrating . There seems to be a common link with pwp and stress . I was under a huge amount of stress at one point too . I keep thinking what has caused this ? I had a head injury as a child and I read there could be a link between Parkinson's and head injury up to 40 years later if there was loss of consciousness which there was . My husband says it is futile to keep asking the question and I know he's right really . It is what it is . Gonna take the dog for a walk . Hope you feel much better soon John . 


#14

Hi John, sorry there is no pic of me i couldn't get it to download!! I was diagnosed 30th June this year. I have stiff sore arms, lose balance sometimes and got a bit forgetful. I had constant shaking in my arms and twitching in my face which felt so strong just wasn't visible. My medication is making me feel rough at the moment. I take 5mg Selegiline which i am fine with but just started taking pramipexole and now motilium anti sickness. How are you feeling about your diagnosis? Best wishes


#15

To be honest it upset me when I was told that i have Parkinsons. I watched my dad have the condition for years before he died (Nothing to do with Parkinsons btw).

I am trying to be optimistic about things. Knowing that there are a wider range of drugs available than back in my fathers time keeps me hopeful that the symptoms can be controlled. I have to change and adapt some of the things I do and sometimes I get annoyed and frustrated that I already have difficulty with some things like typing.

But I'm starting on Madopar soon so I shall see if that helps.


#16

Hi john,

Shelly65 is right I am on Madopar 62.5 x 3 per day & pramipexole 0.7mg x 5 per day. I started on pramipexole 0.088 mg the day I first met my neurologist and with them I noticed a difference within one tiny tablet. But after a couple of months my left leg started to get weaker, so in came the Madopar which i can't take anymore than what I've stated. as I get spasms in my hand but my walking has improved. My PD is all left side, I am 48, and was diagnose in June 2013. Like I sure with you it was a bolt of lightning one hell of a shock, but deep down I already had guessed co's years ago I cleaned for a university professor she was a lovely lady & she had left side PD. So it was like a mirror in the past when the tremor in my arm first set off. PD was always my biggest fear even bigger than Cancer. I'm coping ok now still work full time ride a electric bike to and from work bought through the ride a bike to work program. It is my only means of transport without my husband to drive me, I wish you well and will be keeping my fingers crossed that the drugs work for you. And if you need someone to talk to I am there for you.

 

My Kindest Regards BB


#17

Thanks BB and everyone. I shall give the Madopar a try and report back as soon as I get my prescription.


#18

Thats great John i hope they work for you.

My Kindest Regards BB


#19

Got my Madopar. It was a bit of a challenge and in the end my doctors seemed to mess up my prescription. I shall have to phone them tomorrow.

I went to see my Neurologist on Sunday and she gave me a hospital prescription for the Madopar but being a Sunday the pharmacy at the hospital was closed. The Neurologist knew this and said I could hand it in to my doctor who would then do another prescription for the same. So off to the doctors i went on Monday and handed in the prescription for the Madopar and also a repeat for the Azilect and explained everything to them and gave them a stamped addressed envelope for them to post the prescriptions back to me. I got them today, two of them, one with the 65.5mg on and one with the 125mg on.

Hang on, where is the Azilect? not here, I'll have to phone them tomorrow about that. Also, the pharmacist said they could have put both doses of Madopar on the same prescription. Because they were on separate prescriptions I had to pay twice.

Anoyingly, If I had got the prescription from the hospital i'm sure it would have been free? My first lot of Azilect was.

Right, calamity over I'm now about to take my first 62.5mg Madopar. Bottoms up!!


#20

Hi John how annoying ! Hope you feel better once the madapar kicks in . I am seeing neuro mon . Taking the azilect only and was prescribed vit d as this was low . What else do you take ? Do you take vit e ? I read this is of benefit . I seem a bit better on azilect but my leg hurts when I drive and walking remains an issue have to concentrate on my right leg all the time . Has the asilect helped you at all ? Do you drive ? When I saw pd nurse I asked if prescriptions would be free and she said no but they were trying to get this changed . I was surprised . Some people are taking a lot of tablets . Doesn't seem right . Other long term medical conditions have free prescriptions .