Hi, new probable diagnosis


#1
Hi, I'm 45 hrs old, wife and mum of 3 school age kids and newly diagnosed with Parkinsonism and awaiting a DaT scan to aid diagnosis of PD. My symptoms are; painful left shoulder, loss of coordination in my dominant left hand, occasional tremor, poor handwriting, loss of arm swing, unable to tap left foot to music and daytime fatigue.

I'm just wondering what I should base my decision on for when to start medication. Concerned re side effects as I'll be on them along time in view of my age. Any benefit in waiting for worse symptoms before starting or will my fine motor coordination improve on meds? Any advice from longer term sufferers appreciated. Thank you. Silverkins

#2
Hi Silverkins.

I can't offer advice on medication but there are lots of people on here who can. I am sure you will hear from them before long.

I just wanted to say welcome and I hope you enjoy the forum.

Worrals

#3
Hello, Silverkins, and welcome to the forum! I'm new to the forum, too, but not new to PD. My first symptoms began 15 years ago, and like yours, they struck first on my dominant side. As you know, every case is different; I can only tell you what my own experience has been. It may not prove to be the same for you.

I was reluctant to start medication because I feared the dyskinesis that sometimes goes with it. But after about four years I was losing the ability to write, to cut my food with a knife, to control my legs when swimming, to play the piano, to walk with a normal gait. (Oddly, my tremor was still a rare thing.) So I started on a minimal dose of Mirapex, which may have a different name in the UK. Almost miraculously, it reversed all of my symptoms except the cutlery problem. (That is mostly a matter of holding the knife at the proper angle, but I really have to concentrate to do it.)

For several years I stayed on just one medication. Then, each time I noticed my symptoms progressing, my doctor either increased my dosage of Mirapex or added a new medication. I now take two drugs to delay PD's progress and two to help counteract the symptoms. I have perhaps been lucky, but side-effects have not been a problem. If I experienced occasional dizziness, as I did when starting Azilect (rasagilene) and later Sinemet, we lowered the dosage a bit.

Do not hesitate to get second and third opinions. In the U.S. I found neurologists rather ignorant of the details of PD and research underway. My first neurologist told me I'd be in a wheelchair in ten years! Well, I'm still living my normal life today. The second doctor offered me a prescription for Sinemet on my initial visit. I declined. When I discovered the Parkinson's Institute in California, I finally got responsible and compassionate treatment. And my current doctor is at a university hospital and is also in PD research.

I've probably given you more personal history than you wanted, but my main message is to keep a positive attitude and take things slowly. I am 15 years into this merry situation and feel like the same person I always was. You may be equally fortunate!

#4
Thank you both for your quick welcome and informative replies. I haven't had the medication chat with my neurologist yet until after my DaT scan but I have faith him.

#5
Hi Silverskins, Well, I have had PD for about forty years, I know I was diagnosed 33 years ago. To be honest I can't really remember what medication I was on . But obviously it has been changed since then several times. The type of PD I have is inherited. If you are reffered to a good neuro, or a Parkinsons Advisory Nurse, I am sure you will be put on the medication which is best for you. I had two children when I was diagnosed and as my pd has progressed they grew with it and along with my husband have been very helpful. But you will find there is always someone here, on the forum willing to help. And it is great fun too. So Welcome.

#6
Thank you, Blu Angel.

#7
Hi Silverskins.

I was Diagnosed in March 2011, and was immediately put on Mirapexin. It did get rid of some of the symptoms of pain and stiffness but oh my god I swear I never felt worse in my entire life. I felt sick and dizzy all the time despite taking anti nausea tablets and felt like I had the flu. I stuck it out for 6 months before admitting defeat.

I then took Requip XL and titrated up to 8mg. I felt reasonably fine apart from the dizziness and it helped my symptoms, and then the weird side effects kicked in. Sleep paralysis, hallucinations, sparkly vision etc.

Then tried neupro patches (rotigotine) which made my skin itchy and didn't touch the symptoms.

I then saw a PD specialist who put me back on requip XL but at a lower dose of 6mg and added azilect. This seems to work for me. No more sparkly vision etc and it helps my symptoms.
I get a lot of neck pain and was given Amityiptyline for it and overnight the dizziness went!!!!!. must have been caused by stiffness in my neck.

I guess the moral of the story is,everyone reacts to these drugs in different ways. You have to find what suits you. If you can cope with your symptoms as they are then take your time to think about it, talk over the different options with your neurologist. Ask to see a PD specialist, that made all the difference to me.

Good luck !!

#8
Thank you, Caroline. That is very helpful. Feeling rather daunted at the thought of regular medication as that will really signal the reality that I have PD for me I think.

#9
Hello Silver

As a result of a severe tremor in my right hand, I was diagnosed with PD 2 years ago (but I had other symptoms before that). I went to 3 neuros who all agreed with the diagnosis. The second one I went to put me on a full dose of amantadine and .25mg of mirapex 4 times per day - since increased to .5mg. My symptoms disappeared almost over night. We were both of the opinion that quality of life was important while I was relatively young (65 at the time) and I have no regrets with our decision.

When the first neuro made his diagnosis, he asked how old I was. 65. "Well you don't have long to live with it anyway" and offered no medication. Needless to say, I have not revisited him.

By the way, I have not suffered any side effects from either drug except the occasional, fleeting hallucination early in the morning. They last nano seconds and have never bothered me. They kind of remind me of 1968!!

#10
Thank you wpgchap. I guess these will be the things I need to consider when I have the medication chat with my neurologist. He has already said that ultimately the decision is mine when I start meds.

#11
Hello everyone !

I am 51 and just taking Rasagline after having Parky for 3 years. I have a bit of a limp, struggle to write, a bit of pain but other than that feel fabulous not counting the occasional bout of tiredness!!.

I have been advised to increase meds, not sure yet but may trial it, just great to make your own mind up. I do find myself thinking about long term side effects but also what if I get run over by a bus then I would have missed out on feeling better doing more things etc now ! Probably more likely to be run over by a tram as live near Sheffield.

Great to be on the forum, need a giggle and know other Parky people out there, who are still having a laugh and enjoying the world.

Miss Hopefull

#12
Hi miss hopeful,

I've just posted under Newly diagnosed re age/meds etc. I'm on same wave length as you re taking/holding back on meds. Mind you, i have done some silly things recently like writing out & sending a b'day card to the wrong sister-in-law, kissing an old colleague on the cheek at a training event and telling her "i'm sorry to hear about your dad, must have been a shock" thinking she was the daughter of someone who had recently died only to be told later it wasn't her dad!!!! (although he had recently been diagnosed with cancer so think i got away with it!!...eeek).....i drove up the wrong street to my hairdressers and wondered where her house had gone!:laughing:i did something else a bit random as well but i can't remember!!! Think i was affected by the snow....my excuse anyway

Bring forth the doctor!:laughing:

Diane