Has anybody been tested for Parkinson?

Dear all,

just lately it came back to me that while my walking is really bad, I can bicycle perfectly fine. I can even ice skate without the slightest problem and without any symptoms. But as soon as I get off my bike or leave the ice, the vertigo and the swaying is back.

Years ago a friend said to me “This is quite typical for Parkinson”. To which I thought “Yeah right, I’m 40 and my hands aren’t shaking, oh please”. But now my father was diagnosed with PD and I did a bit of research about it and was horrified that quite a few of the lesser known symptoms apply to me.

Has anybody of you ever been tested for PD? Has any of your doctors ever consindered PD?

Thanks a lot

Are you in the UK? From what I can gather from friends of mine who have PD it took a very very long time to be diagnosed and it only happened once the hand tremor was so severe it was interfering with their lives. I don’t know if this is because there are repercussions with regard to driving once you are diagnosed or not, but in the UK taking time to get the diagnosis seems quite commonplace. I am not sure either if there is a definitive test or a collection of symptoms which imply the diagnosis, but you would know about that from your father. Sorry I cannot be more helpful.

Frank, I’m starting to do much better now, but at my worst I was always dizzier walking than cycling. In fact, dizzier walking than running. This is completely normal for ear trouble. I told my neurologist and she said it makes sense. It makes sense to me that in cycling you are less dizzy because your brain is aggregating the senses. When walking your brain switches attention from one side to the other. If you have a unilateral issue, this will show up then. I don’t think MAV is actually a brain issue at all, its just a healthy brain dealing with crap information.

Personally it was really obvious I was dealing with an ear, not brain issue - I suddenly started to have tinnitus, started getting minor intermittent ear pain and had hearing distort a little in certain situations like taking the local metro underground. I now know this is because I have secondary hydrops. The distortion is due to pressure in the ear changing the resonant frequency of the ear. I’m told this is reversible so long as the pressure calms down.

Thanks a lot for your replies!!!

@Revolving: I’m from Germany. Is the driving license automatically suspended in the UK when you are diagnosed with PD?
As far as I know there is no 100% safe diagnosis as opposed to diabetes, etc. In my father’s case it was just extremely obvious to the neurologist. Just not to us, because we all only knew about hand tremor as a symptom. About the only one of them that he does NOT have.

My idea is now to get a prescription for L-Dopa and just see what happens. Should be a pretty safe prove/dispove thing.

@turniitaround: makes sense what you say about a healthy brain dealing with faulty data. Sh.t in, sh.t out as the computer scientists say.

However … I somehow feel that my legs and feet aren’t properly responding to the commands of my brain. But I’m sure we will see to that.

BTW, is it known why being drunk causes a very similiar type of bad walking?

Hello Frank. In the UK you have to notify the DVLA the driving license authority if you are diagnosed with PD but I am not sure if it means automatic reversal of the license.

As for your brain not knowing what your feet are doing, this was a symptom of VM/MAV for me and made me walk as if drunk. I used to look down at my feet all the time to see where they were which people used to comment on. Now I am on meds, topiramate and nortriptyline, I am steady and can walk properly. I think it is a pretty classic symptom of VM and using a stick is helpful before getting the meds right.

I know you are worried about PD because of your Dad, but if you have been diagnosed with VM/MAV I would see how you get on with the meds for that first as any disease that affects the brain’s electrical circuit, whether PD, MS or VM, is going to share some similar symptoms. I hope you are being seen by an oto-neurologist who can help you with this.

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Thanks a lot for your reply. I tried Flunarizine, but it wasn’t very helpful but caused heavy side effects, so I’m not sure what to do at the moment. It used to be pretty good with just Migravent, but lately I experienced a major drawback … :frowning:

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Migravent I believe is for classic migraine headaches, not all the vestibular symptoms, hence the need to see a neurologist who specialises in vestibular aspects of non typical migraine . I would really recommend you find one sooner rather than later because the right medication can really help save your sanity and get your life back.

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Just for now, Migravent does help me a lot