Hi Colin,
It is so annoying when they dont follow up test results and you have to pester them, I hope you get your results soon, Hope you are getting closer to a resoulution.
Good Luck
candy xxxxxxxxxxx
Hi Colin,
I just thought I would get in touch and find out how you have been. Have you managed to get any results and are you any closer to having a diagnosis.
Best Wishes
Candy xxxx
Hi Candy
I'm good thank you how have you been hope your ok
No not much further finally got to see one of the better Dr at my surgery who has reduced the Propranolol tablets and what a difference that's made I feel a bit more human at the minute she has been able to get my appointment with the consultant pulled forward to the 27th of this month instead of September
i asked about my aches and pains and she got more blood test done to check for Rheumatoid Arthritis and it turns out when the results came back my blood sugar levels are high and according to the nurse I'm also border line type 2 diabetic just to add to the fun advised to maintain a steady diet and I probably won't need medication with another review for that in three months my Mother was diabetic and she said I have got the jean from my mum 7 Kids and she leaves it to me bless her
it's getting to the stage now where I go to the Gp for one thing and come out with something diferant
I've been to the Doctors that many times this year I've got an invite to the Christmas party
Good to hear from you. Take Care Colin xxxx
Hi Colin,
Yes I know that feeling, I feel like I live at the GP surgery as well, I have been having some problems with my meds making me very sick, But better since they have been changed. Brill news that you dont have to wait now and you will be seen soon, September was such a long wait. Good luck, I will be in touch after your appt and I really hope you get the answers you need.
Best wishes
Candyxx
I had a few months like that when i seemed to always be at the doctors for one thing or another , but thankfully things have settled down , i suffered really badly with sickness and nausea when i first started sinemet plus but had to come off them and since i have been on Madopar i feel so much better and have finally managed to come off the domperidone all together , when the pd nurse came a few weeks ago she commented how well i now looked and that i appeared to finally be controlling my pd not it controlling me and i think she was right , the only issue i do have at the minute is constant lower back / hip pain on one side of my body , its always there does not matter if i sit or walk or lying down in bed, it is always in the same place , not sure if it is pd related or something else but i have a appointment with my neuro on 10th June so will mention it to him then .
Hi Shelly 65
I've only had problems with one lot of tablets propernolol as you know and dealing with the side effects from them and at the minute like I've said I do seem to be a lot more suited to the reduction of this tablet not completely but less like a zombie
So what you and others with Parkinson's have gone through just to get to the type of medication that works and suits you I can't imagine but no doubt I'm going to find out on this journey
Candy has been having some problems with her medication as you probably read in her post and it's good to hear you both seem to be getting on better with them although I'm sorry to hear your having more problems with your back pains Shelly I hope you can get that sorted out without to much upset to your medication now you got the balance right
so for now I guess I will just keep pushing on with the doctors and see where I go but I have decided and with the help of my doctor that has of Monday I am going to tackle the ESA she has. Given me a sick note and thinks I need to put my health first before my business and she is so right
so yet another battle I'm not looking forward to
Take Care Colin xx
I hope you finally get everything sorted soon Colin and get a definative diagnosis i think sometimes the not knowing does not help , if you knew you would know how to deal with things and get the proper medication
I have just started my ESA claim , i am hoping it is not a case of deja vu and i have the same problems i had with my PIP claim , i was on a different benefit and i have been given a 8 week run on so my ESA claim will start from June , i was told i could advance claim which i have , i was told that i could self certify for the first week so i have to go to my doctor to get a sick note dated from the 11th June , apart from that i have to wait for the paperwork to come then i can send all the medical evidence i have including my pip report and hopefully i wont need a atos assessment and they will do things based on paper evidence but not holding my breath
I am back to see my neurologist in June my original appointment was for August but he bought the appointment forward to discuss the results of the genetics test i had earlier in the year , so i will mention the back pain to him when i go
I hope everything goes well for you Colin and you get a diagnosis soon xxxx
Hi Shelly
all that paperwork sounds frightening might be easier for me to keep working and put up with the pains never had to do anything like this before
best wishes Colin
I think Candy and Gus have both been through the ESA claims process and i am sure both of them found it fairly straight forward , nothing like the nightmare claiming pip , you will be fine Colin xxx
Hi there all,
Yes the ESA claim is much easier than the PIP, I applied in Jan and I am still waiting for a decision and I know Shelly had terrible problems.
Can I ask you Shelly do you suffer from very cold hands and feet? Sometimes mine are purple!!! and I feel the cold a lot..
I know PD can affect the thermo controls in the brain and that can make you feel too hot or too cold. Just wondering if you have had anything similar.
Take Care All
Candy.xxxxxxxxxxxx
Just came across this in my wanderings round the site. You mention the body's thermostat.
I was so bad with sweating before getting a correct diagnosis, that I dehydrated badly and my blood tests were off the chart. They thought I had kidney failure.
When I got the correct diagnosis for PD my nurse told me it was part of Parkinson's. I know one other person on here suffers the same.
I therefore conclude that the body's temperature control is affected in some cases. Nothing can be done other than taking care as far as I know. I presume you are affected at the other end of the scale. Have a word with your PD nurse.
I will gladly swap you your cold for my hot. I can put long johns on to keep warm, but I can't take my skin off to cool down.
Morph.
Hi Saturn,
I find that I do not sweat hardly at all, My hands are always so cold, I am sorry to heat that you have also been having problems regulating your temp as well, It is really uncomfortable isnt it when your body does not react properly to the temperature.
Thanks for your reply, much appreciated.
Keep Positive, best wishes.
Candy xx
Keeping positive is not a problem........trying to get a sweat soaked tee shirt off without help is.
I got so frustrated the other day, when Mrs Morph was at work, I cut the damn thing off down the front with a pair of scissors.......it was only an old one.
Mrs Morph always has cold hands...........but you know what they say......cold hands warm heart.
As for body reactions......my body does as it pleases these days.......I worry not. I can still get about, all be it somewhat uncomfortably.
One thing PD has not changed and never will, is my sense of humour.
Hope summer warms you up.
Morph.
Candy
Sometimes my feet can be very cold to the touch but the one thing i do seem to suffer from and i do not know if it is pd related or not , but i find that i cannot tolerate cold the winter months were terrible for me if my hands and feet were cold i had a horrible tingling/burning feeling in my hands and feet and my feet and hands will itch and tingle and burn for about 10 minutes then it stops very uncomfortable feeling indeed
Thanks Guys,
Yes Shelly like me I think it is the circulation causing that, During the winter I had chilblains on my feet and they were burning and itching and bloody awful.
People think that PD is just a tremor but it is much more than that, There are symptoms that you can see and just as many that cant be seen.
It really does impact on the whole body.
Take care Guys.
Candyxxxx
Hi people
My medication did that to me virtually straight away started in my feet and like Candy I ended up with chilblains I was rubbing cream on my feet that I got from the chemist then it carried on through my body couldn't stop my nose running I was walking round my flat with that many layers of clothes on I looked like the Michelin Man I was even thinking of making the door ways wider Not really only joking
But I know how you feel not nice
Take Care Colin xxx
Colin/ Candy
That is exactly how it feels in my hands and feet like i have chilblains all i can do to try to get some relief is scratch or rub my hands and feet on something until the tingling and burning wears off very unpleasant indeed, It must be a pd thing but i know it sure drives me crazy even something so simple as holding a cold milkshake sets it off
Hi Shelly
i know that feeling I felt like I wanted to rip my skin of the chilblain cream really did relieve it though it was £6 something for a small tube but it was well worth it took two to three days to start working but what a relief
Take Care Colin xx
Thanks Colin
I think i will get some in when the weather starts getting cooler xxx
Yet another appointment with my consultant & still don't seem to have made much headway really.Most of my appointment time allocated to the tremors because my GP reduced the Propernolol and I was happy she did it's been a bit of a trade of really to relieve most of the side effects I was suffering came at the cost of increased tremors
So he has decided to leave me on the lower dose of Propernolol but if the side effects get worse to stop taking them altogether and gave me a prescription for Primidone 50mg don't know how many to take can't get them until Thursday due to bank holiday he tells me they will help with my aches & pains
Its at that point where we start making a list of all these pains and all these medical people seem to go into panic stations got as far as my right leg going numb when I walk and for a while now I've started getting shooting pains in two of my fingers of my left hand and it got stopped there to book me in for a nerve conduction test on my right leg & left hand and another appointment in Four months time
Maybe I should stop ranting on about aches and pains last time my GP got blood test done for rheumatoid arthritis and came back border line type 2 Diabetic I thought going to the doctors was supposed to make you feel better
well that's my moan out the way feel a bit better now
Take Care Colin