Possible PD symptoms? Is my GP hopeless?


#1

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?


#2

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.

 


#3

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


#4

 

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.


#5

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


#6

 

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?


#7

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 shit out of me which I am reliant on now going forward to manage this beast.

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


#8

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. 


#9

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


#10

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. 


#11

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.


#12

No problem we've all been there and I won't lie, there's always days when you're down. It's allowed. Just get back up and live your life, differently maybe, but living nonetheless.

In case I sound like positive Patty, it helps me posting on here and seeing how others cope. I've learned a lot from others who have PD longer than me. I'm sure you'll will too. 


#13

Hi emvee

Your symptoms certainly sound like they could be consistent with PD but a neurologist should be able give a better opinion.

Early symptoms I had, not all of which were obvious until I was formally diagnosed, included:

- Rigidity in the arm and hand on the affected side

- Reduced arm swing on one side when walking

- Difficulty with fine motor skills, e.g. fastening buttons

- Stiffness in hip and leg

- Loss of smell

- Constipation

- Vision problems

- General fatigue and disturbed sleep

As you will be aware there are drugs that can alleviate much of this once you are properly diagnosed.

Good luck!

 

Hi Wildrover

I too was lucky enough to have private medical insurance, which was very helpful in getting a quick and correct diagnosis.  But most insurance will only cover the initial diagnosis and not the ongoing treatment, and the drugs are very expensive.  So I switched to the NHS.  I must say they have generally been excellent, though it does take time to get appointments.  

Also, I have a post on work that might be of some help - something to bear in mind is that PD often progresses very slowly and, with medication, you likely still have many active years ahead.  So no need to make any quick decisions.

Best of luck!


#14

Well its been an emotional roller coaster so far. Had a DAT Scan today with a follow up hopefully next week to rubber stamp the diagnosis with the neurologist. One minute i am positive and upbeat about the diagnosis, the next I am giving it "what have I done to deserve this". Just trying to take one step at a time and hoping when i get some meds I feel better.


#15

Hi Wildrover,

There's alot to take in. It's going quite fast for you so your head must be spinning. All your feelings are natural.

Like you say take each day as it comes. Hopefully you're finding some support on here. 


#16

Thanks Divine1, yes this forum helps alot. Good to know other people know exactly what your going through.


#17

Had it confirmed today that I have Parkinson's confirmed by the DAt Scan. Been prescibed Rasagaline!! Any advise on what to expect from this drug?


#18

It knocks out an enzyme which is busy mopping u p "excess" dopamine as part of the body's  amazing capacity for  self-regulation.   It therefore makes the best use  of the 20% plus dopamine   you have left before symptoms of deficiency become obvious.    If   someone is already on meds. as I was it smoothes things out a bit.    This is what I understand as a non-medically trained PWP


#19

 

Just to update, I have a DATscan next week.

Very impressed with how quickly everything has progressed within the NHS. I returned to a different GP at the end of July, had a neurology appointment at the beginning of August, MRI mid-Augst and now DATscan next week (Sept).

Am finding work incredibly difficult though. Something about the smooth polished corridor floors makes it very difficult for me to walk along them without my leg foot really sticking and dragging. Really bizarre. Much worse than walking on carpets.

I'm a teacher working with teenagers with extremely challenging behaviours. Just the teaching side of the job is difficult enough at the moment, without the added difficulty of finding it hard to get around the school :(


#20

Hi Wildrover,  neurologists usually start PWP on Rasagiline or Selegiline, ( both do a similar job). Rasagiline is 10 times as expensive as Selegiline! I was on Selegiline for a year, before I was given Ropinirole, which is a dopamine agonist, alongside it. Ropinirole doesn't suit a lot of people, so be aware of this. The drug can cause compulsive addictions and has many side effects. Some people find it helpful, however. I came off Ropinirole pretty damn quick! I'm now on Madopar, which is Levadopa + Benserazide and this suits me just fine.

I know it's all a bit confusing to start with and you'll find that no two people react the same way to the medications. Also, you have to do your own research and reading, about Parkinson's. Ultimately, YOU know your body best. It took me over a year to come to terms with my diagnosis, (5yrs. ago), so I know how you're feeling and wish you all the best.

Twinks.