Suspected early onset parkinsons


#1
Hi everyone,
i am not used to using forums and have low vision. I wanted to ask for advice as after reading others posts you all seem like very caring people. I am not sure where to post so if this is the wrong place please let me know.
I live in Australia and am in my 30's. My neurologist believes I have earlly onset parkinsons as I have a tremor that started in one hand while resting. Apparently i have other symptoms such as a soft voice, rigid muscles and joints and reduced arm swing when walking. After starting Anticoagulant medicines i haven't noticed much improvement and actually have more involuntry movements like spasms in my shoulders and my neck. Now the neurologist believes that I have some symptoms which are stress related as well as early onset parkinsons. I am going to see a psychologist if I can afford it as i am already paying for chiro and physio and need to see a speach pathologist too. I looked up PD on the internet two weeks after the diagnosis and realised i have most of the symptoms. My muscles and joints are rigid and the tremor is making me really tired. I don't have a lot of faith in doctors given my experiences. I just want a definate diagnosis and treatment to get better.
any advice appreciated.

#2
Hi KM

It can take some time for a diagnosis of PD as it is only diagnosed on symptoms really that develop over time and Neuro's need to see how your symptoms develop before making that decision.

The only way to tell absolutely if you have PD is via post mortem ( a very,very long time away for you) but a DAT scan is quite reliable for telling whether or not you have PD (not 100%accurate though).

God luck and hope you find the help you need.

Caroline

#3
Hi and welcome. I had PD for at least 18 years before being diagnosed and was in a bad way. I spent a fortune on chiropractors which could have been better spent and so wished that the medical profession had picked up the illness earlier.. The rigidity in the muscles, tremor and tiredness do sound like PD but they are also symptoms of other illnesses.
Unfortunately there is no definite diagnosis –Can your doctor refer you to a neurologist for specific tests such as a DatScan? This is a scan of the brain that shows what is going on inside and usually confirms that the production of dopamine is ceasing – that is if you have PD.
I don’t understand how you can really benefit from physio if they don’t know the underlying cause. If it is PD – then the medication should help so much with movement.
I think you need a proper diagnosis – your doctor seems like he has an idea – now he needs to hand you over to the specialists – Insist that he does so – sooner than later. I was so relieved when I found out what the problem was - along with a whole lot of other emotions - and 6 1/2 years later my movement is still better - well, majority of time - than before diagnosis.
Good luck
The Breeze

#4
Hi KM and welcome.

Your symptoms do soound like PD, although you don't seem to be receiving any medication for it, unless I've missed something. I'm no expert on medicines, but I always thought anticoagulants were used to treat thrombosis. I'm a bit puzzled by that.

#5
Hey there KM,

Welcome to the forum.

Did you see a neuro specialised in movement disorders? Better still, go and see two. I know it is quite expensive but at least you will have a verdict from two different specialists. They may not commit to a dx or might say it is based on the resting tremor + rigidity. The benefits of seeing two neuros is if PD is confirmed, then the treatment regimens of the two may vary given your age.

Good luck with everything! Whereabouts in Aus are you? I work in Sydney and live in the Gong.

Best wishes,
rico

#6
hi km, sounds like pd symptoms but dont understand why you have been given anticoagulants these are used for thrombosis prevention, never heard of them for pd, i would push for an appointment with a consultant my gp suspected pd and within 8wks had a diagnosis after being seen by a consultant neurologist and having a scan, so good luck hope you get some answers soon. sue

#7
hi km,

Lily and the others are giving you advise.

There is currently no 100% proven way of confirming PD unless your dead! Therefore your best chance of getting accurate confirmation of PD, is to see a Neurologist who specialises in PD and/or movement disorders, and get a brain scan done also.

#8
sorry km, i must remember to read my post before pressing the send button :flushed:

I meant to say Lily and others have given you GOOD advise!