OK... Now I'm worried :(

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1

Hi all,

I'm very new to any of this. I posted over on newly diagnosed but I'm not diagnosed. Saw the GP last week about the strange chemical smell I keep smelling and was sent home with some antibiotic nose cream. A week of the cream has seen no change.

Over the weekend I read about the finger tapping test and tried it out. I was stunned to find that on my left side after a couple of seconds of tapping my finger locks down and just sort of 'spasms'. Trying really hard to concentrate on making it tap again just doesn't work. Really shocking and disturbing.

So I have just booked an appointment to see another GP tomorrow. Will be taking the list below of my other symptoms to show him as I'm not always great at explaining when I'm this worried. Is that a good idea to give him a written list?

Also, if he does refer me to a neurologist, how long might I expect to wait to see one? I'm really worried now and didn't sleep much last night.

Oh, BTW I'm a 47 yr old male teacher if that is relevant.

Thank you.

Left arm not swinging or barely swinging when walking

Left leg tendency to drag and/or scuff the floor if a don’t actively concentrate.

Left leg drags when turning sometimes

When getting up and walking after sitting, left foot stays put and almost trips me

Stiff left shoulder, uncomfortable to lie on at night, wakes me up sometimes

‘Chemical’ smell, not all the time, sometimes strong sometimes mild. Sometimes definitely a smell, sometimes more ‘internal’. Unpleasant, occasionally falls just short of being nauseating

Difficulty rising from a chair, some difficulty sitting down

Difficulty getting in and out of car (more so getting out)

Difficulty turning over in bed

A little difficulty getting dressed, particularly putting underpants on

Tendency to walk into things

Face feels ‘heavy’, more so as the day wears on


Timeline
First noticed left leg problems in Oct 2015. Within a few weeks back pain developed, diagnosed with prolapsed lumbar disc (work in job where occasionally get assaulted). Open discectomy January 2017, solved some pain in legs but not mobility issues.
First noticed strange smell in Feb/March 2017
Noticed left shoulder stiffness/pain April 2017
Noticed lack of arm swing in July 2017 but hadn’t been looking for it

2

Hi Emvee,

Sorry to hear your symptoms, which sound very familiar. I think you do right, going to see a different GP. Yes, take your list with you and ask if you can have an appointment to see a neurologist asap. I was diagnosed within 2 months of seeing my doctor, but only because I made myself available for any cancellations at the hospital for MRI scan and DATscan and kept making a fuss. A DATscan will more accurately suggest whether you have Parkinson's or not. No neurologist can say for sure though, but you have to trust their judgement. I think a lot of people have to wait over a year to get a diagnosis, which must be mental torture. I needed to know sooner rather than later, so kept the pressure on my Neurology dept. You sometimes do have to make a nuisance of yourself to get heard and quicker responses! Once you know for sure, you can start medication to help your symptoms. It may take a little time to get the right meds. and dosage, as no two people with Parkinson's are the same and we can all respond differently to the meds. Also, it takes time for some of the meds. to work, so don't get disheartened. Sorry to sound a bit negative, but thought you'd appreciate an honest reply. It's not all bad news, by any means and when you eventually come to terms with the condition, you'll find that life can still be good. Being positive and getting plenty of exercise, helps a lot. 

Wishing you all the best and keep posting about anything that worries you.......we're a friendly lot on this Forum.

Twinks.

3

Hi emvee

Your story sounds very similar to mine, its taken almost 2 years but i was diagnosed last tuesday. I eventually paid to see a neurologist privately as the nhs wait was at least 6 months in my area. The neuro sent me for a datscan which showed positive for reduced dopermine on my left side.

I also take lists when i see gp, neuro etc as i forget things so its a great idea.

Best of luck and hopefully you will be seen soon.

Michelle

4

Hi emvee,

Getting a diagnosis does seem to longer for some than others. Is it a GP thing? Is it a consultant thing? Is it a regional thing? Who knows.....

When you get a diagnosis, IF it is PD, try not to worry too much, easy to say I know, I was diagnosed approx 8 years ago, age 45, the route to diagnosis began at the GP about 9 months before that.

IF you do have PD, yes living with it is a pain in the butt to say the least, however it does not mean the end of everything, just the beginning of doing things differently.

Keep on doing as much as you can for as long as you can. IF you do have PD work to keep yourself in the best shape you can, so if or when a step change in the management of your PD comes up your body is ready to make the best of whatever that change may be. I've used the Wii fit most week days before I go to work. Consequently the day I'm due to go into hospital, ready for DBS surgery, will mark my 3,000th day of activity on the Wii fit. Sure my scores are nothing like they were way back at the start, but at least I can still do it.

There is a vast range of PD experiences on this forum and plenty of us willing to offer suggestions and chat.

When it comes to PD the one thing no to lose sight of is, we are all different.

Regards,

Tractorman.

 

 

5

Thank you, Twinks, Tractor Man and Shelly for your reassuring responses.

Twinks, you did not come over as negative at all.

It seems there is a great deal of disparity between how long it takes to get a diagnosis (why do people write dx?) 2 months, 9 months and 2 years is a huge variation.

Does anyone know anything that might differentiate PD from Multiple Sclerosis, please??

6

Despite our GP suspecting MS and so referring OH to a MS neuro, the MS neuro diagnosed Parkinsons immediately, and brutally!!!

7

Hi emvee, 

It's easy to feel panicked at the moment as your piecing you're symptoms together. The dat scan will give the best answer to you. From scan to my diagnosis took about 4 months. I don't know enough about Ms and having been diagnosed only 18 months ago I'm just learning about PD. 

I do know that finally knowing what's wrong helped me get on with the business of looking after my health. Finding an exercise that works for you and good support system. Take each day as it comes and keep asking questions. 

8

Thank you. DivineR that is an interesting point about finding an exercise that works for you. I must admit I do very little exercise at the moment except for my job teaching children with behaviour problems which can be quite physical at times!

 

9

I went back to a different GP today.

To begin with he started talking about cranial nerves, or some such, affecting my smell and didn't seem particularly concerned.

I then said I had come across a finger tapping test but couldn't do it with my left fingers at all. When he asked me to show him his attitude changed completely. He did a few other quick tests but then he said I needed to have urgent blood tests checking for cancer followed by an urgent referral to a neurologist if the blood tests are negative.

All rather worrying but he seemed to think that I would see a neurologist in about 6 weeks but if there was anything nasty in my bloods things would happen a  great deal quicker.

10

Hi Emvee

It's good this GP has moved things on a bit for you. Sounds more thorough.

The thing is cancer would need immediate treatment. Whereas PD may not change much over 6 weeks and of course they can only treat the symptoms, not PD itself unfortunately. It is distressing to have to wait for a neurologist appointment (been there done that).

If PD is diagnosed it would be good if you could get to see a Parkinson's Nurse. Mine was really reassuring and helpful.

It takes a while to get your head round a diagnosis - you can't rush it. I was diagnosed last year. But there is a lot of help and advice out there. Cultivating a positive attitude (easier said than done) helps a lot and of course as everyone else has said, just keep doing whatever you can. Take care Daffy

11

Hi Daffy

Thank you for your wise words.

I was interested that you said that they can only treat the symptoms of PD. I know they can't cure it, but I seem to remember reading that the quicker you get treatment the better, as the drugs can slow down the progression?

12

Hi emvee

I don't know if it can be slowed. I'm a beginner myself. But I remember my GP, who made the initial diagnosis said it would have made no difference if I had gone to him sooner. To be fair he did start me on sinemet straight away, before I even saw a neurologist but that was purely to deal with the symptoms. I did feel a lot better quite quickly. I didn't have all the tests you are going through, diagnosis was purely on symptoms and movement etc, but I am older than you (64 now) so that may be why. 

Your job sounds really hard work and probably quite stressful at times.I have a step granddaughter with considerable behavioural problems and can only guess what teaching a class full must be like. You have probably already noticed that stress doesn't help much either. I'm not helping here much am I? Sorry! Take care Daffy

13

Hi Daffy, thanks for your reply.

It is a very stressful job, yes, but rewarding. What I have noticed is that if I am tired my symptoms are much worse.

The only tests I've had so far are some basic finger tapping, eyes, pushes, etc at the GPs and I have also given bloods which are being tested for cancer markers. If they come back negative then my GP plans to make an 'urgent' referral to a neurologist. I wait to see what the current NHS definition of urgent is!

14

Hi emvee

Hope you don't have to wait too long for bloods results or for referral.The waiting game can be very wearing.

Dealing with tiredness at work must be difficult as I know you can't always "work through it". Your work is so worth while for those children that need a different type of schooling from main stream. 

I was self employed until last year when my husband and I decide to close our small business due to a range of reasons, not all health related. After a long busy day I sometimes found that by 4.30 in the afternoon after a 5 am start I'd be shattered some days and just have to go to bed for a couple of hours. Not an option in your line of work though unfortunately!

15

Hey Emvee,

Best of luck to you.   I recently got diagnosed about 6 months ago.   I'm learning as I go myself, so can't give the best advice,  but to echo the comments of the other folks...exercise.   I've found like many it helps with symptoms.  Hopefully slows it down too...

And potentially most important, it makes me feel like I'm taking some control back. When I feel down, I know that there is something I can do immediately to make an impact.    One of the best feelings I had after my diagnosis was the rush after I completed my first hard exercise class.  

 

 

16

Thanks, Double that sounds like good advice :)

Does anyone know if there is any particular exercise that is best? Presumably, any exercise is better than no exercise but I have seen a wide range mentioned. It seems that many of the exercises mentioned on websites have been chosen with older people in mind but I'm only 47.

For someone my age is it just a case of doing any old exercise regime? Is it best daily, every other day, aerobic, strength building, etc?

17

Hi emvee, 

Any exercise is good and everyone has their strengths and weaknesses. I'm 51 and love yoga or pilates. I've even got my husband to try pilates. 

I'm about to start a course of Tai chi recommended by my consultant. Good for balance. I've also heard boxing is good but obviously needs to be taught by someone who knows about PD. 

Walking is great as well. I know some people do weights too. Obviously you have to be careful to make sure it's suitable for your body. 

Good luck. 

18

Hey emvee,

In addition to the tai chi, yoga, etc to help with balance and range,  there are some who believe that the more vigorous, the better.    As Divine eludes to, start with what is right for your body.   I injured myself trying to over do it on the treadmill early on and that didn't help anything.   

Here in the states we have a program called rock steady boxing.   Not sure it's made it to the U.K. Or if you have similar programs.   It's specifically for Parkinson's.  it's great because you are surrounded by folks in the same boat (all at different stages) and everyone can go at their own pace.   I'm at the young end of the range in my class and got my butt kicked today with the workout.   Similarly the folks 25 years older got their exercise relative to what they can do.    I'm still a newbie,  but the people in class swear by it.     

I try to run or do the eliptical mixed with walking push ups etc.  I try to do as much as I can because hopefully it helps :)

 

 

19

Hi Double, 

The rock steady boxing is what I was thinking of, but couldn't remember the name. There isn't one in my area of London but maybe emvee can find one where he is. It was shown on BBC during PD awareness week. 

20

Perfect!

I've found it to be a good anchor for me.   I mix match during the week and rock steady on Sundays.