Newly Diagnosed


#21

Hi All. Thanks for your messages. I have made contact with DVLA now and all the practical stuff is in hand. Another step towards acknowledging Parkinson's.

Anyone found good remedies for stiffness in the neck and shoulders? It seems to worsen when I tilt my head back slightly to drink and goes up to the base of the skull....gentle massage seems to relieve for a whilelol 


#22

Faith - If it's of any help, I understand that bit about "acknowledging". A dx is one thing, and if your symptoms are fairly mild and reasonably controllable by drugs, then you don't have to acknowledge much to the world. I don't much like driving, don't do much - yet having to tell DVLA (and worse getting the usual three-year licence offer in return) really pulled me up short.

Hang in there

S


#23

Hi Faith,

Welcome, I was diagnosed three years ago aged 52, I thought I had a trapped nerve or something, convinced I was wasting the neurologists time. Bit of a shock to be told I had Parkinson's.

 

I too had neck and shoulder pain and dizziness. The doctor gave me Amitriptyline for the neck pain and the dizziness disappeared as well.

Regards

 

Caroline

xxx


#24

Hi Caroline. Thanks for your reply. Snap! Same age this year! I thought I was going to be told to wear a brace or something similar for my stiff hand!

I am seeing the PD Nurse in a couple of weeks. I'm not keen on starting meds but these symptoms can be debilitating when they take holdeek


#25

Hi all

although there are no two cases the same it is amazing how similar our symptoms can be ! I too was diagnosed 3 years ago (aged 53 ) following months of pain with what I thought was a frozen shoulder !

Gave in to taking meds which have certainly helped

J x


#26

Hi, I started with tremors last summer, but it was Dec before I got to see a neurologist. He put me on patches (Neupro) which I didn't get on with. So now I'm on ropinirole 10mg., having worked up from 2mg with still no let up in the tremors.

I have a few questions regarding the meds I take. I don't know if this is the right place, I'm new to all this.

1. Are these meds supposed to cease the tremors when I hit the right dosage? I can't get a straight answer from my GP.

2. How long should I be on a dosage before saying it doesn't work and increase it?

3. My neurologist has suggested a DaTScan to confirm PD. However he seems pretty sure it is and I am reluctant to have a scan when it appears to offer no benefit. There are risks associated.

I hope someone can provide some answers.

GTB


#27

Hi GTB and welcome to the forum.....i hope you find the answers that you are looking for on here. There are folk who have more knowledge than me but i personally have been diagnosed a year though have had symptoms for approx 5. I had a brain scan and all the usual tests and was relieved to finally be told why i had been feeling so poorly for so long. I was put on Requip XL and eventually increased up to 14mgs, it was not helping with the trembling or the neck rigitity and so last Christmas the nurse introduced some co-beneldopa (Madopar) 12.5/50 three times a day and decreased the RequipXL down to 10mgs. After a couple of weeks  i started to feel the difference with the stiffness decreasing and the tremors were not as bad though still there, generally made worse if i am anxious or hungry. They have given me a lot of energy and at times quite euphoric!

Everyone has different effects it seems from the various meds and symptoms of PD. I would say that you know your own body better than anyone and if you feel that your tablets are not working as you feel they should then discuss it with your PD nurse. I phone mine if i need reassurance re the meds and have just been given the ok to increase the Madopar gradually if i feel the need. I am hanging on at the moment but think it won't be too much longer before i take more as the pain in the joints and stiffness is increasing again and my arms and legs are feeling heavier like they did before. 

It is a whole new world this PD lark isn't it? eye rollbut i would suggest to keep posting on the forum and to keep contact with your PD nurse......i hope this helps a little and i wish you all the best.

Dolly

You can click on the pic of my cat and read my story if you want toevil    


#28

Hi GTB. I'm also newly diagnosed. My neurologist suggested I had a DaTScan, to confirm diagnosis, which I did. Although I was nervous about the whole thing and apprehensive about the outcome I think it has given me assurance that it is PD and nothing more sinister. I understood your concern about the risk but for me it was the right decision. I hope you find the forum helpful and can make a more informed decision. Faith.


#29

Hi everyone and welcome to the forum Faith, i was diagnosed with pd last August at the age of 47, although it did come as a shock i was sort of expecting it , i first had symptoms about 5 years ago with a tremor in my left hand , my gp put this down to anaemia , then i visited a couple of more times with various problems stiff when getting out of bed and up from a chair again gp was not to concerned she put it down to my thyroid problem ,then last July i went back with a worsening tremor and a very painful left shoulder , my gp said she would have diagnosed essential tremor but she was not convinced so referred me to a neurologist , given what my gp had said i came home and had a consultation with Dr Google who kept saying essential tremor or Parkinsons being has my gp had already ruled out essential tremor  part of me  was expecting a pd diagnosis but it was still a huge shock to hear it , my neuro said he was more than sure it was pd , i sat there stunned and all i could say was i am to young for parkinsons i must have sat there stunned because my neurologist asked if i understood what he had said  , i said yes i am just shocked i need time to get my head around it , it took me quite a few weeks to come to terms with it and it did feel like a emotional roller coaster i was ok one minute then in tears the next but i read all i could about parkinsons and joined the forum , i worried about telling my friends and family so when i felt the time was right to tell them i posted a open letter to my friends and family on my facebook and made it has light hearted as i could

It was a huge blow for my family as 3 weeks after my diagnosis my 76 yr old mother was also diagnosed with Parkinsons  and my maternal grandfather had a dementing illness , so given this my neuro offered me a genetic test to see if the cause of pd in our family was in any way connected to genetic mutations i am still waiting for the results as i believe they take about 2 months,

There is lots of help and support available on the forum you are in the right place

 

GTB

i can only speak from my experience i currently take Madopar (Levodopa) and Rasagiline for my parkinsons i take 125mg of Madopar 4 times a day although it calms my tremor down a lot i do still have it , it becomes more noticeable towards the end of my dose .


#30

Hi Shelley 65 

It must have been an awful shock for you.  Gob smacking is what I would say and I know because Ive been there.  I went to my gp and told him that I thought I had Parkinsons but he dismissed my claim with a wave of his hand and said that nobody can make a diagnosis on a tremor.  Twelve months later I went back and the tremor had worsened  he sent me to a movement clinic.When I saw the consultant she said that my doctor had said in his letter to her that he thought I had Parkinsons and had told me so. And in her professional opinion I had got Parkinsons.  You could have knocked me down with a feather. I felt that I had been conned by the gp and wondered if now she was conning me.  So, I told her she was mistaken. Daft but at the time you are not acting normally. However after a short period of time I have accepted it because life stands still if you dont and it does make you assess your life and living. I live life with Parkinsons and enjoy to the best of my ability, so I am sking SPENDING THE KIDS INHERITANCE, finding a more open minded fuller life with my best pal, the old fellow. So good luck with getting your head around things and allow yourself to try and think of it as a different life experience, scary cos of fear of the unknown, but try and enjoy out of life what you can. 

Ps am also going to make a bucket list too

Thinking of you

Astoriaosis


#31

Hi all.....as the still struggling forum has been closed i have started up a "How are you today" on the Wellbeing forum, so look forward to our catch ups. All best wishes 

Dolly x


#32

Hi Dolly

I thought that it had just been my old computer but bought another and guess what the same trouble.  I wonder why. Sent a post yesterday but it does not seem to be here too. Ah well.

How did you get on with the PD nurse re your medication.  I meet up with a couple of ladies that I met when we were diagnosed we were invited to a day of introduction to the services available in the area we reside which was very good and informative.  Is this service offered to you and it was followed up by a course of physiotherapy for four weeks in which they talked about balance, posture, walking, benefits of exercise and getting in and out of bed. Of the two ladies one of them has the shakes quite badly and it distresses her.  I suppose what I would like to know if there is any medication that addresses the shakes and is effective. My shakes have got marginally worse but I find the profound tiredness that comes over me during the afternoon troublesome but as I have said I like to look for the positive side and it does give me an excuse for hitting the sack with a good book.

Got plenty to look forward to this month what with Mothers day, a birthday, and our anniversary and a holiday in a week or so time.  Great.

Best wishes

Astoriasis


#33

Hi Astoriasis...Good to hear from you and that meeting sounds a very good idea....no i wasn't offered anything like that at all though they did eventually send me a physio to the house for several visits which helped as she gave me various exercises. Stretching, balance and co-ordination. My nurse doesn't seem to think that many of the meds help much with the shakes, though i have found that mine have improved on the co-beneldopa (Madopar) i went onto them last Christmas and still on the same dose. I don't see my nurse until next month, my main problem is still the trots!!! and bloating and gripy tum that i have had for about a month since i was on hols. I am off to see my GP next week about it. The mornings are the worst i trot several times and my tum looks like i am pregnant and the noises it makes!!! i have tried Loperimide and that eased it but i don't want to keep taking that in case its a bug of some sort and need anti-biotics maybe?  (watch this space) eye rollThe tiredness comes so suddenly doesn't it? is it Mr P or the meds? i find generally i am ok during the day but like last night i was out for the count on the settee and woke with everything aching and stiff. What plans have you made for your Birthday? I hope you have a great day and Mums day too....and Anniversary wow you do have a busy time ahead, it does you the world of good to have lovely things to look forward to....and of course your holidayrazzi will look forward to hearing all your news matey.

Meanwhile i will keep trotting!!!! you keep painting and we will both keep smilingbig grinrazz

Best wishes

Dolly x


#34

Hi, Astoriasis new flower --

I'm just weighing in with my experience, for what it may be worth.  My first medication was Mirapex, a dopamine agonist.  But my tremor was not eliminated until I started taking carbidopa/levodopa (25/100).  The tremor does seem to be the trickiest symptom to conquer, and sometimes it triumphs despite our efforts.  Also, different meds and combinations of meds work in different cases.  I've known several pwp who have said that Amantadine decreased their tremors.  For me, it did not affect ANY symptoms!

Best wishes,

J


#35

Hi Astoriasis

I concur with J (so far as I can). Certainly the DA I'm on does not control my tremor which is in my right hand and is largely activated by stress and nerves (the b*gg*r being that pretty much everything stresses me). I think what's important is what's important to *you*. I can mostly manage with the shake, and hide it in company. Many people can't, and need to find a combination of meds that reduces it for them.

Best

Semele