Been told I have symptoms of Parkinsonism

I visited my GP about 2 weeks ago to discuss coming off Ropinerole which I have been talking for about 7 years because of my Restless Leg Syndrome.

However she was more interested in the way I was walking ( I knew I was not walking properly but put in down to the fact I had a knee replacement 8 months ago)

She referred me to a neurologist who I saw last Saturday. He told me I had some early symptoms of Parkinsonism and arranged for a brain scan which I am due to have next Monday.

To say I am a bit shattered is putting it mildly. Other than my gait I have no symptoms. I am tempted to put my head in the sand and not attend the scan.

Is there any advantage in an early diagnosis if it is true that medication doesn't slow or cure Parkinson's? Would I be prescribed medication immediately when I have no other symptoms?

I realise every case is different, but is there an average time for progression from little symptoms to severe symptoms?

Sorry if I am rambling a bit, probably not thinking clearly.

I am a 64 year male.

14 Replies

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  • It's a bummer Scottie but welcome. Scottie I would attend that scan, if it the one I think it is it won't show you have PD, it's to rule out other things like a brain tumour.

    You are in the U.K. and my experience is they won't push meds on you until you want them. But what about your restless legs, the neuro will perhaps prescribe different things if you have PD than if you don't.

    One thing that people often ask about - the doctors almost always call it Parkinsonism until they have finished investigating. You may find it suddenly changes in your notes to idiopathic Parkinson's when they have finished investigations.

    I am just picturing myself hearing the news and the shock of it all. Take it slow, there's plenty of time. It's a huge thing to get your head around.

    You ask about progression and you will get all sorts of responses on how to reverse or stop it, believe what you will but medically no one has been cured. These first 5 years are usually fine and with a little treatment life will continue as it has done. in time you get more symptoms and it gets more complex to treat but I have friends who have had it over 20 years still doing OK.

    Best wishes

  • It is frightening but don't despair. I was diagnosed 10 months ago and at my 3 month appointment when they were convinced I had PD they gave me azilect which MAY help slow progression. The neuro said if it was him he'd give it a go. I have found it helpful.

    Have the scan to eliminate other nasty things and then if it turns out to be PD you can decide if you need any meds or want to try other things first.

    How is your sense of smell?

  • My sense of smell is fine

  • Loss of sense of smell is often, but not always, one of the first symptons. Perhaps you will be ok.

  • yoh. i definitely dont have PD with my sense of smell.

    i ask the shop helper where the donuts are because i can smell the cinnamon.

  • My husband hasn't lost his sense of smell even after 9 years. It is not a diagnostic feature but just adds to the picture that the clinicians are building.

    Go to the scan and find out as much as you can about what you have. Nobody will force medication on you and you can make the decisions from a position of being knowledgeable.

  • Do attend your scan. It is much better to know than to not know. I was not unhappy to be diagnosed - it meant there was a treatment for my symptoms. Speaking of symptoms, my gait was only affected /after/ a number of other symptoms appeared. Any tremors in your arm? Any persistent stiffness in any muscles? Tendency for cramps in any particular place?

  • Thanks for your reply.

    No, I have no tremors, muscle stiffness etc.

    The neurologist said I had "an acute reflex" when he snapped my foot back. Sometimes, not always, I walk badly with a shuffle and, no matter how hard I try to walk normally, I just can't do it

  • That is different than my Parkinson's gait symptom - I tend to drag a foot on the same side as the arm tremor and the stiff muscles. The shuffling walk is a late stage Parkinson symptom and one doesn't get to that without having initial symptoms first. What is going with you does not seem like Parkinson's as i know it.

  • oh gosh. RLS? doesnt that just drive you in sane?

    um. i hope i dont blame my rambling on age. it means i would have been old all my life.

    best of luck for the test. big cyber hug

  • Every case of PD is individual so saying it does not sound like PD as you know it, means nothing really. My husbands first symptom was balance and falling. But he has PD not MSA etc. He was diagnosed in 2012. but obviously had it much longer. Has pretty severe tremour these days too along with lots of other stuff, still has arm swing though and sense of smell.

  • I have read that some symptoms of PD can be helped with injections of B-12.

    the Restless legs, for instance, and the problem of poor balance, are both helped and sometimes even cured with B-12 injections... I repeat the word "injections" because taking oral B-12 only results in about 10-15% of the B-12 making it into your system... I give myself injections of B12 at home... trained by my Doctor's office nurse. It's not the complete answer but it's a start.

  • Well, I attended my MRI scan on Monday and saw the neurologist today.

    He told me the MRI scan should mo abnormalities but I still had to wait about 3 months for the next scan, as it could only be done on the NHS and not privately.

    He repeated that he is convinced I am showing early symptoms of Parkinson's.

  • Hi Scottie. There might be some value to you if you had the brain scan, but only if it proved that you do not have Pd. Then you will have to find out what you do have!

    May I suggest that you go to my website - reverseparkinsons.net and read how to use your conscious brain to control your walking, and other movements. In that way, at no cost at all, you can overcome your bad gait problem and if you take up Fast Walking, you can probably reverse your Pd symptoms, as I have.

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