The doc says No... but I think so!

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1

Hi there, I wonder if anyone out there can help me. Basically I am 99% certain that my Mum has got Parkinson's. I have researched symptoms on the internet and from what I can see she has every symptom. My Mum was a Nurse a super fit, super young pensioner until recently. She lost her sense of smell about 10 years ago and of course at the time we thought it was just some medication she was taking. About 5 years ago my Dad asked if I'd noticed that she was talking quieter/softer, I had, but I still didn't think about PD. Over the past 2 years in particular I have noticed various changes in my Mum that as far as I am concerned are absolutely to do with PD. 

1. She shuffles whilst walking and 'drags' her left foot slightly on the ground.

2. She really struggles using her left hand and cradles it when she isn't using it (I have to cut her food as she struggles with cutlery, I cut her hair as she could no longer put it up, she struggles with zips,buttons etc) She says it trembles inside but not visibly.

3.She stumbles and loses her balance easily.

4. She talks quietly and constantly clears her throat. She slurs her words and can't keep up with conversation ( We have a recording of her on her phone and she is unintelligible)

5. Her handwriting has become really small and she says she cant make it get any bigger.

6. She has a 'stare' and just looks 'different' sometimes.

7. Her arms don't swing when she walks they stay by her side.

8. She appears depressed and uninterested in her hobbies, knitting, sewing, crochet.

9. She stoops.

10. She suffers with constipation she says it can take 30 minutes!!! 

She has been to the doctors who sent her for a scan a year ago which came back clear ( I wasn't aware PD showed on a scan) The neurologist sent a letter to her doctor saying that she may be displaying signs of early PD but he couldn't be sure. I took her to a different female doctor this week and told the doctor my concerns. She asked her some questions, told her to stand up and walk across a tiny room and then performed some routine tests, stroking her arms, knocking her knees etc. She then told me that she thought my mum had had a slight stroke and was depressed. I could have screamed. She said that because my mum didn't pill roll, stumble when standing or drag her foot (My mum was working hard not to!) it wasn't PD. Is this normal? Is it really hard for Doctors to make a diagnosis. I even told the Doc that my mums maternal Grandmother had PD (I'm not sure that makes a difference) She has to go see another neurologist in 4 weeks about the stroke that she thinks she's had.Has anyone had a simiar experience? I don't know where to go or what to do now.

Many thanks for reading my ramblings :)

 

 

2

Hi JayBeeBee,

I agree, it certainly all points to PD. You must be so frustrated. My husband had a MRI scan in 2015 which came back clear but was confirmed with PD. Our Dr tried him on a low dose of Madapar to see if there was any improvement, if there hadn't of been then he would have considered another diagnosis. Hopefully the neurologist will listen to your concerns and investigate further. If not keep pestering the Dr until they take notice.

The very best of luck

3

Thank you so much for getting back to me and thanks for the advice I certainly will keep pestering. I thought they might have tried her on some kind of medication initially but it appears harder to convince the medics than I thought :/

4

Let me know how you get on.

5

Hiya it is my husband who has the PD. He was diagnosed last August. He was misdiagnoised for at least 4/5 years by our GP.

He suffered with lots of shoulder stiffness and mobility problems...visited GP many times only to be told .....its a frozen shoulder,trapped nerves,arthiritis, your age etc.....

He was dragging his left foot,voice got softer and no arm swing lots of PD symptons. Eventually last May I went to GP with him as he had a very bad tremor in his arm,hand and mouth and I insisted the symptons were not any of the excuses that had been made before. The GP agreed to send him to a neurologist. Within 30mins of being in that consultation my Husband was diagnosed and was told that he had probably had PD for several years.... Hes now on sinemet but to be honest I cant really see a difference in him.....

I do wonder why GP's are often quick to fob us off with silly excuses rather than look into the real reasons symptons are present? 

I know that if my Husband had been diagnoised a few years ago he would still be in the same position as there is no cure at this time for PD.....BUT maybe the GP's need to listen to family and patients more.....my Husband was never offered any tests of any kind by GP....when my Husband was diagnoised by the consultant our GP apologised and said he had probably misdiagnoised my Husband for several years.....then added "its difficult at your age 59, to think it may be PD".......

So JayBeeBee...keep pushing your GP and dont let them fob your concerns off....

Good luck for the future.Hope your Mum gets the help and support she needs and you can find support yourself..

Best Wishes Babesbrown x

6

Hi Babesbrown, I'm so sorry to hear of your husband's battle to get a correct diagnosis.

It is absolutely shocking that the Doctors aren't listening to the ones who are seeing the day to day changes. 

Thank you so much for the feedback it's strangely comforting to know that we aren't the only ones being 'fobbed off'

All good things to you and your husband 

JBB x 

7

Hi Jaabeebee, I am under the care a great neurologist whom when I first saw her ordered 2 scans for me, the first was an MRI and that came back completely clear. The second was a couple of months later and was a DAT scan which showed up that I have PD. I was put on meds straight away (sinemet) and am doing ok so far. I wish you and your mum well and all I can say is follow your instincts and keep asking for another opinion. 

8

Thanks for that Windy1949 I shall mention a DAT scan when we see the doctor in 4 weeks. Incidentally what is a DAT scan? :/

 

9


Sounds very much like my wifes symptoms she lost her sense of smell 18 years before diagnosis. I think the scans are to  rule out anything else and therefore more likely to be PD, my wife was also in nursing.My wife had to take ill health retirement and cried because she loved her job.....and unfortunately things don't get any better, as you probably well know.


              All the best to you.....Billy

                 

10

Hi Jaabeebee,

A DAT scan is similar as far as I know to an MRI but you are injected with a ratio active dye a couple of hours before the scan. There is no need to go into a tunnel like an MRI you just lay on a trolley and slowly but surely a small revolving scanning plate goes around your head, took around 40 mins to get mine done. I live in Ireland and the dye was flown in that morning from Germany but maybe in your area it may be easier to get. It's nothing to get worried about but my neurologist says it's shows much more than an MRI. I hope this helps and anything else I may be able to throw light on please ask. Wishing you both well.

11

A hello to everyone who commented or read my earlier post about my mum. Well I'm both sad and pleased to say that my mum has finally been diagnosed with PD. It's scary but also a relief to know that something may be done now about her codition. Thank you for all the advice guys x

12

Hi JayBeeBee

I felt the same when I was diagnosed. PD diagnosis is scary but not the end. At least now you know what your Mum is facing. I found that was half the battle. Acceptance takes a while but I have found myself coping better with symptoms since starting medication.

That internal trembling you said your Mum mentioned - I have it too. It's very disconcerting, but easier to cope with now that I am on medication and because I know what's causing it.

As you probably already know there's loads of information on this website and if your Mum can get an appointment with a Parkninson's nurse I found mine was very patient, helpful and reassuring.

Good luck to you both Daffy