So sorry to hear about your dreadful experience. It's bad enough having to put up with what you have got'
I attend the local hospital and have not yet seen a neurologist and have been diagnosed for over two years. She is very nice and totally convinced that I do have Parkinsons but she says she has been known to be wrong. I have never had a scan and five months ago requested a second opinion with a neurologist and got a referral from the Gp. I have had about half a dozen letters and telephone calls with the NHS. They have accused me of non attendance for appointments, cancelled me off the list etc despite the fact that i have never been offered one appointment. My Gp has now sent three referals to the NHS and has now sent one to the Neurologist/secretary - so with a bit of luck I may get one.
In the meantime I hope that your symptoms are settling down and that you are feeling a bit better.
Hoorah I have now got a date to attend a neurologist in November. Can't believe it. It has taken five months and three referrals from the gp. I will let you know what happens when I attend. And also this week have had an appointment to have my hip replacement - oh, happy days. Seriously it will be good to have the confirmation through investigations exactly what I do have or maybe ......... Well, we shall see. Curiosity may well kill the cat! The one thing that I am confident about is that once I get over the surgery for the new hip, it will be great - no constant nagging pain! The stare on your face is one of the things that Parkinsons brings with it - you will not be alone. Join me! I dont have the freezing you experience, have the sweats, tremors and fatique. I very often go to bed in the afternoon, have a read and doze off usually for three quarters of an hour - I get my husband to wake me. Most of the time, I put Parkies on the back burner of my stove and enjoy life as much as I can. If you allow yourself i.e ME the privilege of wallowing in self pity it destroys you. Well, that's my philosophy for me and i think it works but we are all different. Interesting what you say about your auntie and uncle. There is no Parkinsons in my family at all. And I have another genetic condition but none of my three sisters, three brothers or mother and father had it. Statistically you would have thought one of my siblings would have. I think the odds were 50 -50
All the best, hoping you are feeling better.
Nowhere near Kent - Merseyside Area.
You Sir display all the symptoms of PD and the treatment you have received , has been shocking, however you are on the right track now PJ so all the very best for the future.
O reading your first post dear friend you exhibit all the symptoms of Parkinsonism for as you will know Parkinsons is just a handy and recognisable group name covering the many and varied descriptions of BLACKHEART ,,thats my description of it,, I have others but I CANT list them here or I would be banned for life, and you will also know by reading the posts on the PDF every reply is variable and similar but different also,, see PJ clear as mud,, so if the visit on Monday does not come up with the PD diagnostic, or PDism,and treat you accordingly ask for a second opinion, or as you say you have another visit in April to St Georges London surely they will give what is plainly obviously BLACKHEART PD., please inform me of the results,I will be thinking of you, oh also if as I believe it is PD fear not there are many and varied drugs available to help you battle this awful disease and you certainly seem confident and up for it (the battle) plus the support available on this forum is endless so go for it girl, my e mail is available if you need a more extensive description of keeping parky in his cage.
Kindest Regards FED exlike
ps appologies for mistaking your gender Paulette , nice name by the way
What can I say PJ that would give you the answer that you want so much, except to say that I have been waiting for an appointment with a neurolgist since May but at last I have one in December. I've almost lost the will to live (joking) but it is so frustrating. I think if I then I experience what you have - it would do my head in. But your're doing the right thing, get on with living and if you eventually do get a diagnosis remember it is a different journey for each of us. It is a second opinion I seek. My diagnosis has been made on the signs and symptoms I present. This was three years ago and I did make a bucket wish and since then I have done a world cruise, written two books and basically enjoy life as much as I can. By the way, I worked as a nurse for forty years and I sometimes think we have seen so much in out lives and cared for the sick, that in some ways, I feel it is an injustice to labour me with Parkinsons! in my later years but we cant pick and choose. I always think of what I was told as a child, 'You are never given a cross that you cannot bear' but it aint much good when you have lost the way!
Ps Please allow for my sardonic nothern humour!
Yes I know what you mean about the tiredness. Most afternoons I go and have a lie down. I feel as if a black cloud has descended on me, not depression profound tiredness - I know what you mean! I do find that if I listen to my body and have that rest it does make me feel a lot better throughout the rest of the day and I am able to get more out of my day.
Did you like midwifery?
It was not my favourite form of nursing but it suited me when the children were smaller and we had a really good matron.
Look after yourself and look forward to hearing from you
sorry to hear about your health problems. I can hear mentally my mother who has been dead for some fourteen years, 'Well it's a bugger and indeed it is' If it's not one thing it's another. i was attending for an orthopaedic appointment for a hip referral. They hadnt got the Xrays I had had and said that the gp had done the referral for my knee; only to be told by the orthopeadic surgeon that my signs and symptoms were a- typical because the pain was in my hip and leg and not in the groin. He thought that the pain could have been from my back which had signs of arthritis too. So what with arthritis in my hip, knee and back I thought I wouldnt tell him about the trouble with my shoulder - yes, it is a bugger!
;You start to wonder if you are a hypochondriac. Ironically there is some research being undertaken about pain and parkinsons. They believe that people with parkinsons feel pain greater than those without it. It will be interesting to see what their results are.
Hope you are feeling better
And you take care too
Had the long awaited appointment with the professor who was willing to listen to me and was not arrogant. He gave me a comprehensive examination and then told me that I fell between the two stools of Parkinsons and Parkinsonism. He said that Parkinsons can be diagnosed on just a physical examination and that a scan was expensive and unnecessary and he offered to keep me on if that was what I required.
Soooooo - I was a little disappointed because I really do not want to have Parkinsons. I nursed too many people in the latter stages and have too many memories. I think that I would rather the dreaded C than it. The only other disease that I think is worse is motor neurone disease. BUT, he did say it would not kill me and everyone has a different journey. I decided to go back to the local team I attend. They are accessible, listen and the person I see is a specialist in Parkinsons and operates a client led approach; which is good for me.
I also saw the local physio who told me that the diagnosis for Parkinsons is made on the presence of three signs or symptoms. These can range from tremor, stiffness, slowness and difficulty of movement or things such as REM (Rapid Eye Movement when sleeping) i.e having vivid night mares, acting out your nightmares, tiredness, and reported memory problems, difficulty in thinking - So, I think you can see it was easy to diagnose me! How about you?
how is the pain and the sweating, rapid pulse and shortness of breath? I dont think this weather helps - do you?
Thinking of you