After seeing an neurologist a few weeks ago- he said it maybe early Parkinson’s disease, probably due to a parkin mutation or an unusual essential tremor. But since then my foot has being shaking a lot more often especially when resting , when standing my knee shakes, not my foot i was shaking a day before (thought it was nervous) i met him, but i didn't tell him about it- its happing more often now. I also notice that im a little lame walking as it feels like one leg is bigger than the other (but there not there normal length). i also have some problem walking up hilly ground and upstairs i have not told him any of this since im only noticing it now more often. does it sound more like Parkinson's Disease now. i have stiffness, resting tremors in my hands- he already knows this. Thanks
Your symptoms sound vey like mine and they say I've got PD. I'm not sure as I've managed without meds for 5 years which PD people usually can't. Who knows? The main thing is to work out how you can best live with it whatever name they decide to give it. And hopefully reach a point where it's not the only thing on your mind (hard at first for sure. I'm only just getting there)
Best wishes on your journey.
I got your PM (not quite sure why you asked ME but i will try and answer your post as best i can).
As far as i am aware, there are only 2 ways of being fairly certain that someone has PD. The first is by taking Levodopa medication and seeing if symptoms improve, the 2nd is by having a DAT scan.
DAT scan's are however expensive and can sometimes produce 'false' negatives so many neuros are reluctant to offer one. If you search DAT scans on this forum, you will find more information. Basically, the head is scanned in a special way which enables imaging of the area of the brain where dopamine is stored. Reduction in dopamine (a chemical in the brain) is what causes PD. If these stores show to be depleted, then it is a positive affirmation of PD.
If you chose to have this scan privately, i think you would be looking at between £500 and £1000 and wont necessarily get a clear answer if you are at an early stage of PD.
PD symptoms vary from person to person, but the following are some of the symptoms that could indicate PD:
Tremor, either visible or internal - usually starting on one side of the body in the hand.
Frozen shoulder (or what is thought to be that)
Cramping of the toes and pain in the calves/ankles
Decreased ability to perform certain finger movements, eg rapidly pressing and unpressing the thumb and forefinger together in one or both hands
Lack of arm swing whilst walking in the side most affected (it is natural to walk with a swing to the arm, yet seems to stop in some people with PD
Micrographia - handwriting that becomes smaller and smaller as you write a sentence
Dragging of the foot on the side affected most
Anxiety and/or depression
Fear of crowds
Lack of coordination with certain movements eg brushing teeth
Stiffness and slowness of movement (neuros often test this by taking your arm, asking you to relax as they move it around - they can detect resistance and stiffness)
More frequent and urgent visits to the loo!
Not all of the above are present in everyone with PD and that is why it can take a while to get a clear diagnosis. There are also other conditions which can present with some of the above symptoms.
The book 'Daily Telegraph Parkinsons' Disease A Guide to Treatments, Therapies & Controlling Symptoms by Dr David A Grimes has a fairly comprehensive guide to possible other causes of your symptoms...this may be worth a read.
One other thing that i would like to mention.
In 2008, a newly approved drug was introduced in the UK. This drug is called rasageline (brand name Azilect - again you can search threads on here for more information). According to reports, there is some hope that this drug may be neuro-protective (ie slowing progression) in persons with PD. There is no conclusive evidence yet but it has been suggested that it is most likely to be effective if started within 6 months of diagnosis. For that reason, if i were in your shoes, i would be trying to get a positive (or negative) diagnosis as soon as possible and if it turned out to be positive would be pushing my neuro to prescribe rasageline. This drug is more expensive than alternatives and is not always offered as a first line treatment. You may have to push for it.
My ex husband first thought something was wrong at age 45 when he showed signs of a frozen shoulder. A while later he found that he couldnt seem to co-ordinate a toothbrush properly without great concentration. He started dragging his foot a bit (not noticeably but enough to wear down the heel of his shoe) and also his writing was becoming difficult and tiny...he didnt have tremor at that stage.
Because rasageline had just been approved at that time, we pushed for a DAT scan. He had one and it confirmed his diagnosis. He then started on rasageline.
Alex...the above is only my opinion based on my own experiences, please dont take anything i have written as gospel but i hope that my post helps.
Hi carrot thank you for the letter you posted last eve i found this so helpful i was diagnosed in jan 2011 so am trying to get my head around a few things Thanks again Take care Chris
Thank you guys for replying its being a great help your information
Thanks for your post. Im glad you found my post helpful. It doesnt take a lot to share what i have learnt over the past few years. Knowing that it may have helped someone with genuine concerns makes it all worthwhile. I wish you all the best for the future and hope that you are able to get any advice, support that you need.
All the best
Hi,l am a lady aged 64, diagnosed in Jan. 09. l have been taking Azilect since last October. l have felt no difference apart from improving my mood, then for the last few months l feel l am losing some of my hair.l have just seen my consultant, who has said, what's more important your mood or hair,- hair of course, Its no good being happy and bald. so he has told me to come of it. l now have the dilemma of giving up something which could slow down the disease and he suggested taking an dopamine agonist, l think he said, ropinirole ( he is writing to my Doctor ) he proceeded to say all the side effects, which have alarmed me so much.is it worth it. l know everyone is different, but can anyone reassure me to go down that road. my main problem is shaking, l was told Azilect would stop that, now it ropinirole. Sorry one other point, l have attacks of pain going up my arm, neck and temple.l feel, its almost like a stroke, does this sound like a symptom. many thanks/
I have very similar symptoms:
Right hand tremor, twitchy fingers etc. Walking difficult at times, right foot scraping and sometimes i stub my toe on the ground and trip - my leg generally feels heavier than the left. I basically have general weakness in my arm and leg which are both quite stiff. I too have difficulty brushing my teeth etc and writing is very small and I find it difficult to write more than a few words at a time before i squeeze the pen so much that my hand and arm tense up and begins to ache. Basically small things are harder to with my right hand.
My right arm also doesn't swing much. I also have been experiencing spasms/twitches in my right leg and shoulder, and I also sometimes feel a tremor at the back of my head/neck.
My speech is also a little hit and miss, at times, with certain words which I stammer with.
I have seen a Neurologist a week ago who observed my symptoms such as the increased tone in arm and leg, dexterity and handwriting. He has sent me for an MRI scan, which is next week, to rule out other things before he will discuss what else it could be.
As yet, I haven't mentioned my fears that my symptoms are very similar to Parkinsons, as I know that it could be something else, and also I didn't want to come across as some sort of hypochondriac. I have accepted that my symptoms are genuine and that I should hopefully find out what the cause is soon.
I prefer to fact find and take a pragmatic approach to things. This forum has been very helpful.
Hi Alex i found your letter interesting since ive been diagnosed i seem to notice a lot more things wrong with myself than i used to, sometimes i think its in my head. I seem to have more trouble with cleaning my teeth its a struggle to write a letter Well im 65 on sunday and am going away to celebrate Im taking each day as it comes and just enjoy the day for whats in it Take care Chris
I found the same. Just putting a name on something means you look for symptoms. Not great to watch yourself all the time.
All the best,
Hi Frances ive just worked a shift at work so that certainly stopped me thinking about myself for a bit , im a carer in a rest home Take care hris
I have all the symptoms that you mention plus trouble swallowing.blocked salva gland.not been diagnosed yet seeing consultant in November.what do you think.doesn't look good does it.
I saw this thread and obviously you were mostly all writing in May so maybe things have moved on, I haven't looked elsewhere on the forum about it. But at the risk of injecting some positivity into the forum, can I say that I too had most of the physical symptoms carrot mentioned, and got to the point where my right side was practically hauling my left side around, but right now relatively speaking, back to 'normal' functioning. I can't compare me now to me 18 months ago, last year I'd avoid walking to the corner shop and last weekend I hiked for over 2 hours. This is due to meds - including agonists - don't avoid them but do avail yourself of a little knowledge IN CASE they don't suit you - be savvy but not terrified, I was lucky and had no side effects. And it's also due to working with the meds and helping my body re-learn what it used to do - practise, walking, arm swing etc, keep fit, then you'll keep your meds dose as low as possible. I went 5 years before i started on any medication but you know when you need it. I know it's 'progressive' but right now I'm amazed at what you can achieve. I want you to have some hope about the management of this condition to help you over the scary times. I'm only 39 and had every incentive to keep going - think laterally and remain hopeful that things can get better instead of worse, make the most of it.