First, to say it must be really horrible for a dx to take a long time, and I feel upset for those who had this added burden. I was dx on my first visit (tho that has a downside too, and felt like unseemly haste).
I’m not sure I’d blame the Nice guidelines however - which head up with patient-centred care issues, the need for swift referral, and the need for dx by a consultant knowledgeable in movement disorders. But maybe their interpretation needs to be tightened up?
I hear other stories on this forum about patients who feel unsupported during this phase - not only because it is taking a long time to arrive at a definitive dx, but because - like me - a dx was swift and (unlike me) not backed up with a pack from PUK (thanks) and invitations to talk to our (smashing) PD nurse. Even with that, I still felt I was tipped out onto the street rather abruptly when I might have benefited by an extra ten minutes just trying to get my head around it.
PUK’s current survey is asking questions around these issues so - are you there, moderators? - now might be a good time to encourage them to develop a campaign with the simple messages:
Being told you might or might not have PD is scary. Help us understand why dx is taking some time, keep in touch with us and offer us support (and mean it) during that period.
Being told you definitely have PD is scary. The minimum we need is a pack from PUK and meaningful invitations to talk to a PD nurse (what do you mean you haven’t got one in this area? - get one right away). We know you consultants are really busy - but after you’ve told us, we need some time there and then to get our heads around it.
good to hear from you again . I have a good appetite but a high metabolism. Also I don't like the bad foods like chocolate and am milk intolerant .
Occ therapist rang, be 8 to 10 weeks. Neuro physio is brilliant, hour exercises each week.
Played with Isobel granddaughter one morning, she was 3 this week, laugh, she used my rail on the bath and thanked me for it !
Ours is a static caravan , Norfolk, near Cromer, can't wait to see how far I can hobble!
went to addenbrookes for pd research, lots of tests, to put me on a study for newly diagnosed. Tested my memory too, that was fun! Little grandson would love it, she said bring him!
yes pd nurse is great, I have been so lucky with people I see.
Just going on my exercise bike again! Swim or rather walk tomorrow, still helps.
I feel for you I really do, Have you asked to be referred to another neurologist to get a second opinion? That is your right if you feel that something is not right. I think you should be given a trial of medication, I have read that they do this if a diagnosis is uncertain, If your symptoms improve while on the meds then it is Parkinsons. I am not wishing PD on you of course, But I think from what you have said you are not happy with the diagnosis you have been given.
Losing your sense of smell is an actual symptom and if you are getting aches and pains, I am sure you don`t get these signs with essential tremor.
I think you need to have more assessments on your condition, maybe you should see you GP and see if you can see someone else for a second opinion.
thanks for your reply I think you can see where I'm coming from with this it's like on one hand essential tremors ok that's not so bad but then on the other hand are the problems that haven't been dealt with which to me still seem to add up to something more
obviously I don't won't it to be Parkinson that goes without saying but I would prefer to know now rather than wait another six months and for his diagnosis to change I'm not one for making a fuss about things but I will take your advice and talk with my GP I've got to make an appointment with them because I'm having a few problems with side effects from the propranolol
I had more or less the same problem Colin , i had a tremor in my left hand which my gp put down to anaemia it did not improve then i started to get aches and pains when getting out of bed , my gp put this down to my hypothyroidism but things started to get worse the aching and stiffness was more pronounced and was happening when i got up from a chair and my left shoulder became very painful and i started to have the feeling of a internal tremor i went back to my gp again who did some tests and said if they came back clear then it was something neurological she thought of essential tremor but was not convinced as you do not have a resting tremor with essential tremor
Is your tremor a resting/postural tremor Colin ?
I would definately take Candys advice and ask for a second opinion failing that ask the neurologist to try some pd meds as Candy says neuros will trial the meds if there unsure of diagnosis a positive reaction to the meds would steer them towards a pd diagnosis
Good luck Colin i hope everythings works out for you x,
I think having to wait another six months would be hell for you, I would go back to my GP and get a second opinion organised, I hope you would get that through quicker than six months, I was prescribed propranolol which didnt work.
Like you said some of the things you could put down to essential tremor but some of your other problems sound like there could be more to it.
I really hope they try you on some PD meds and if after a while things start to improve for you then I would say is pretty conclusive.
I really hope you have closure and if it does turn out to be PD then of course that would be terrible, But I think you have been patient enough, And if the worst comes to the worst you know you have all of us on this forum to fall back on for support
Keep us informed how you get on, Remember you know your own body and you know when its going wrong, I remember saying to my GP I know there`s something wrong I can tell because at the start she didn`t think it could be PD at my age, But I was right unfortunaetly.
i will keep everyone informed it may be by the time I get to see my GP and then wait for referral there won't be much in it
thanks for your kind thoughts & advice whatever the outcome I will stay on the forum you guys have been amazing and I feel I have gained a lot of knowledge from everyone
thank you for your concern yes I have been back to see my GP I think I mentioned that I was having problems with some side effects of the proprenolol tablets
Cold extremities all over my body
breathing problems just sitting in the chair feels like my diaphragm is being compressed I can't seem to do anything without getting short of breath
no interest in any thing and no motivation and feeling tired
I told him they was all side effects of this drug according to the leaflet & explained that I wasn't going back to see the specialist till. 1st September. And I wasn't really happy with the diagnosis I explained that my pains and other things seemed to have been ignored and only the tremors had been dealt with
He did my blood pressure and that was high had a listen to my back & chest said I had a cracking on the left side of my chest when breathing in & out got the nurse to do an ECG gave me two letters for blood test & chest X-ray at the hospital which I have had done .And now I have to wait for the results of those before he will even do any sort of adjustment with my medication maybe this will give him time to talk to the consultant and that's where it's got left at the min
Other than that things aren't so bad sorry for ranting hope your well and thank you for your concern
gosh you were certainly given the once over, which is great. So now a waiting game like you said for the results.
Yes hopefully he will then talk to your consultant. Fingers crossed they go for some sort of medication trial, My guess would be Requip which is what I am on. If they trial you on that for 6 months and your symptoms improve then you will have the right diagnosis.
I hope they make that decision for your sake because you have waited far to long for some closure in wondering whats wrong with you.
Let me know how you get on, Good luck with the test results.
we live in flat fens , last few days very humid and I hate heat in summer anyway, before pd. I have been much stiffer, was much better in fresher sea air.
I'm no expert in the conditions of parkinsons but I would have thought a little warmth on aching joints would be a good thing & give some relief to stiff joints
I know what you mean about being in the fresh sea air and all it's benefits I'm only a couple of miles from the sea side & love spending a day there my god I sleep well after a full day at the sea side
Hi Brenda.......I have arthritis in the spine and pelvis and find the hot weather doesn't help particularly, but it does help for muscular aches and pains. Climate can make a big difference, i remember one of my older clients years ago say to me how her screws were giving her jip...because it was cold and damp. I agree that an electric blanket or a hot water bottle is soothing and relaxes the muscles, i also wear a TENS machine when the pain is bad and have done for approx 14 years. Hope things improve very soon .....keep smiling matey
No not yet They said at the hospital it would be Friday 4th April for the results of chest Xray
But if my doctors are true to form & if there is nothing wrong with the blood or the Xray they wont get in touch i hate it when they do this its like ok there is nothing their so the problems must have disappeared they have done this twice before sent me to the hospital for a check and then not done any follow up when they have had the results back ill give them while Tuesday and then ill get on to them again if you can get past the receptionist your doing well let alone getting to see the same doctor again and i doubt he will have spoken to the consultant so just another thing to drag on
still never mind not going to let it get me down ill get their in the end hope your well thanks for your concern
