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Possible PD symptoms? Is my GP hopeless?

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emvee
Possible PD symptoms? Is my GP hopeless?

Hello all,

I wonder if anyone can advise me or has any opinions and insights they could share?

Just to rewind a bit initially:

Back in 2015, I developed a problem with my left foot dragging if I didn't actively think to pick it up. Shortly after this began I developed intense back pain and was diagnosed with a slipped/prolapsed disc.

I teach children with extremely challenging behaviour problems and often get assaulted and sometimes I have to use restraint techniques (though I am no longer allowed to because of my back problem) so the slipped disc pain would come and go but the stiffness in my legs (especially the left one) and the tendency for my left foot to drag remained. I had injections into my spine in March 2016 which sorted the pain through to about November when I began to struggle again.

I had an open discectomy (operation on my spine to correct the slipped disc) in January, which sorted the leg pain, but the back consultant remained mystified with why my legs seemed so stiff and I stuggle to get in and out of chairs. Last time I saw him he took bloods to check for infection but nothing.

Fast forward to March and I found that I started smelling a very unpleasant, indescribable mystery smell that wasn't there. My wife has an excellent sense of smell and can never smell it. To begin with, I made no connection with my left foot which was still showing a tendency to drag and both legs are troubled by stiffness - I put this down to the operation and I'm sure much of it is.

In April my left shoulder became very stiff and has become increasingly painful to the point where it wakes me at night sometimes when I turn in my sleep (incidentally I have a lot of problems voluntarily turning over in bed).

A couple of weeks ago I mentioned the mystery smell to my wife who was quite alarmed by it and told me I must see a doctor.

Instead, I thought I ought to look up my mystery smell on the net. NHS Direct suggested a number of things including Parkinsons. So I looked up Parkinsons. Left foot tends to drag if not consciously lifted, left shoulder stiff and painful, left arm swings much less than right when walking, phantosmia (smelling things that aren't there), a bit 'wobbly' on my feet at times; all of these symptoms of mine seemed to check with PD. 

I put off going to the GP but eventually, my wife ordered me to so I went yesterday. To begin with, I described my mystery smell, I then went on to say I had looked it up on NHS Direct and it mentioned Parkinsons. I then described my foot, shoulder and lack of arm swing. The GP said that these were completely unrelated to both my mystery smell and to PD. She said that PD is characterised by extreme stiffness and tremor and anyway doesn't occur in people my age (I'm 47).

I explained that it was NHS Direct that had suggested the PD link. She then typed 'change of smell' into her 'GP Notebook' software which came up with no results. I said that the NHS Direct website had called it Phantosmia. She typed this in with an F to begin with but then with the PH when I corrected her but still no results. She typed in smell but it came up with a list of smells that people might give off and their causes.

Eventually, she said that it is probably just an infection inside my nose that I am smelling and sent me home with a prescription for an anti-biotic cream to put inside my nostrils for ten days!

Should I just put my problems down to my back op? Or should I be looking to have my investigation done? To be honest they don;t trouble me too much. My left foot scuffing often jars my dodgy back but the rest of the symptoms don't really bother me overly. I have learnt not to reach for things with my left arm as it can sometimes cause my shoulder to send an electric shock of pain through my body.

All of my symptoms seem to come and go. Some days stairs aren't a problem, whilst on others its like climbing a mountain.

Anyway, I'm waffling now! What do people think?

Tractorman

Whilst I can't answer all of the points raised, here are a few I can.

PD can and does occur in people younger than 47, in some cases a LOT younger.

PD symptoms of stiffness and tremor are just the stereo typical symptoms that lots of people know, there are others.

Difficulty turning over in bed is another fairly regular PD symptom.

Foot dragging and arm not swinging are 2 of the symptoms that got me to go to the GP way back in 2008.

PD is not an easy one to diagnose as some of the symptoms are shared with other conditions.

How easy is for you to see another Doctor?

Regards,

Tractorman.

 

emvee

Thank you for your reply Tractorman. It is very interesting that the symptoms I described are similar to your original symptoms, but surely I would have other symptoms too? Did you have other symptoms too, or was it just the foot drag and lack of arm swing?

Obviously, I'm hoping that the doctor is right and that the smell I can smell is caused by an infection in the nose. I will continue with the antibiotic cream and hope the smell goes away. If it doesn't I will try to book an appointment with a different doctor next time./

Would another doctor suspect that my symptoms might indicate PD though, as this one clearly didn't?

Thanks again

anonymous

 

Hi

I wont give an to answer the symptoms as we arn't qualified to do so even though we are diagnosed, we all suffer differnt in common,but, what I will say is what ever ails you so to speak you may be stuck with the Gp route until they move it onto a appointment with a consultant  as a Neurologist if it is suspected is the only one who can diagnose you, that itself may be a lengthy process in time & process of elimination.

Buzbyc

Hi emvee,

 

As a 42yr old going to my GP with only decreasing but significant lack of dexterity in my left hand noticed when typing, she was very dismissive, and even specifically said she didn't think it was Parkinsons.  I was still worried and she asked whether I wanted a consultant referral.  I do have a clinical background so was quite clear that I did.  About 6 months later after full clinical exam Neurologist was certain it was Parkinsons and as they say the rest is history.

Neurology is a complex speciality so i would recommend a visit to a a different GP but push for a Neurology appointment.

hope that helps

Nick

emvee

 

Thanks, Nick.

I guess if the strange smell doesn't go with using the cream I should request a neurology follow up then.

Not sure how long it will take to get an appointment. It seems from what I have read that a two-month wait for an appointment is normal?

Wildrover

Hi,

I am 50 and was diagnosed last week which was a massive shock I can tell you. Without going into chapter and verse I have had a stiff neck and upper back pain since October last year and was repeatedly fobbed off with pain killers by the NHS. Spent a small fortune on sports massage therapy, Osteopaths, Accupuncture and eventually Chiropractor. All of these people claimed to know what it was and could fix me and more than happy to take my money!!! Started a new job in July which came with private health insurance and after MRI Scans on my neck (spine) and then my brain all of which came up fine i was then referred to a neurologist who gave me the good news last Thursday. Been suffering with the symptons for a few months now, neck and back pain, dragging left foot and loss of dexterity in my left hand but at least I know what I am dealing with now and hoping whatever meds they prescribe it will give me some normality and relief.... Dread to think how long I would have suffered for if not for the private health insurance. The NHS system scares the **** out of me which I am reliant on now going forward to manage this beast.

So don't worry your not the only one..

Divine1

Hi Wildrover, 

It is a shock and at 52, I can relate to that feeling. You're also right that once you get that diagnosis you can start dealing with it. 

Everyone is different but if you can keep active and stay working as long as it doesn't impact on your health. Try to reduce stress and keep positive. 

Wildrover

Not on any meds yet. Going for a consultation next week so will hopefully get prescribed something that will make me feel better. As for the work thing I have no idea what I am going to do. As it stands and struggling physically with the symptoms and also mentally coming to terms with it I have gone on the sick. Until I start to feel a bit better physically I don't want to make any rash decisions. Loads to think about........ Unfortunately my job comes with loads of stress so I need to be wise about my decision

Divine1

Hi Wildrover,

You're right not to make any rash decisions. You may find that going on meds makes a difference to you physically. As for emotionally, that takes time and understanding of PD. Take things slowly ie. Informing yourself about symptoms and progression. Although information is key, looking too far into the future can be daunting and set you back.

Take it slow and be kind to your self. Maybe look into your employers views on progressive illness and the management of that. 

Wildrover

Hi Divine1, thankyou for the sound advise, it's very much appreciated. Last weekend I read Michael J Fox's book "Lucky Man", it actually helped alot. You are spot on about not looking too far into the future, it can get you down a bit over thinking things.

Thanks again for your responses, it means alot.

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