Yet to be Diognosed and in need of advice

Hello I have not been diagnosed with Parkinson's Disease yet but it could be possible with the symptoms I am having and would really appreciate some advice and information. For around two years now I would occasionally have the odd movement in my right leg. I would be sitting watching TV and it would just jump up or kick out depending on position. As it happened once every blue moon I wasn't concerned however over the past few months the movement has become more frequent. Instead one movement every other month I can sometimes have 17 in a day in one leg and 3 in the other. Again I stupidly didn't see a doctor until I was sitting at work and all of sudden my index finger moved back and forth for around 10 seconds. I went for blood tests and they came back clear. There have been other symptoms from sometimes losing balance getting out of a chair, severe aching in joints and muscles, tired easily when walking short distances and most recently muscle spasms on one side of my face. I had an MRI scan which only found a Benign Cyst that wasn't causing problems according to the doctor. This meant a more thorough blood test was required. My neurologist flat out said its not Parkinson's and it could be stress, or resting leg syndrome, or an auto immune disease. I have to disagree as yes it could be stress. I am 30 with 3 children and worries like everyone else from money to safety so I think I can rule out stress but I could be wrong Then with resting leg syndrome from what I have read you have a urge to move which I don't. The movements happen so quick I don't know they are coming and I don't control it. The results came back clear for auto immune diseases so was put on Ropinirole and since taking this for just over a month my symptoms have reduced. I am due to see another neurologist in January. I would like to know how long it has taken some people to get a diagnosis. What symptoms they may have had and their experiences with neurologists and doctors because I feel I will never get diognosed with anything and just fobbed off. Like I tried to say to a GP who said its nothing. It has to be something as its not normal to just move. Any advice would be most welcome.

What you have been given, Ropinirole, is one of the standard treatments for restless legs syndrome. You say your symptoms have improved on this treatment, so that points to that diagnosis. Of course you don’t control it. If that were possible, the syndrome wouldn’t exist. Which particular diagnosis would you prefer? Your symptoms aren’t similar to early Parkinson’s, which is probably why the neurologist said what he did. He is the expert, after all. 

Hi Behjet87,

Diagnosis for me took 9 months. I was 45. 

As far as I know there is no one test to give a concrete diagnosis yet, I might be out of touch on that.

Often diagnosis for PD, and I dare say other conditions too, involves ruling out other things first, I was told this is because other conditions share similar looking symptoms.

The GP was my first stop, after his examination I asked him what he reckoned, he said PD but because of all the variables he wouldn't stake his reputation on it preferring the neurologist got to the bottom of things.

My symptoms were my gait had changed, left foot started dragging, upper body movements were slower prompting people to  ask if I had a bad back or stiff neck, my left hand became very left handed for want of a better description, my sense of smell was on the blink and if stressed or going out doors on a cold day my left hand would start shaking.

BUT the mix of symptoms can vary greatly from person to person just like the mix, quantity and frequency of the meds we take post diagnosis.

Frustration is the order of the day. 



Thank you for you're response. I have spoke with 2 doctors who say restless leg syndrome is an urge to move not an involuntary movement so I don't know which ones to believe. 

Thank you for you're response. No I don't think you are out of touch. There is still no test specifically for Parkinson's. I guess it's going to take a while to know for sure. Like you I have a bad back which is now affecting my left leg but who knows if it is a symptom of other things. I have had bad sense of smell for a while but that could be sports injuries. You are right in the doctors/neurologists ruling out other things to get an answer and I have been cleared for auto immune diseases. Just have to see what happens I guess

Hi Behjet 87
You might be interested to know that there is at present no diagnostic tool to give a 100% Parkinson’s Disease diagnosis, and whilst there are some cardinal warning signs there is no physical diagnostic test that is considered reliable enough for a 100% pd diagnosis, as it is extremely similar in early manifestation to other neurological conditions at present the diagnosis is based upon observation over some period of time, but to this day the only 100% diagnosis of Parkinson’s remains post mortem, and of course by the time it manifests in the individual the dopamine transmitting cells are already @80% dead/dysfunctional, making it too late to do anything other than medicate the symptoms in the patient. At time of writing one of the major goals of research is to establish an early diagnostic tool as it may prove easier to treat or perhaps arrest the currently inevitable decline the earlier it can be detected. Genetic markers and other early testing are a step towards this, but to answer your query on how long a diagnosis can take all I can say is that it varies significantly as does the time it takes the remaining cells to die off. I have personally known of some people to have been diagnosed and lived an almost normal life whatever that is lol, for many years and also on the flip side others whose symptoms progress rapidly. Individual journey is a phrase that I hope you do not become acquainted with lol