I've Not Posted On Here For A Few Years But May Be closer To A Diagnosis

Hi Everyone,

 It has been nearly five years since I last posted anything on this forum. Some of you may remember me. I visited here quite a lot for a time because I was looking for answers to the many neurological symptoms I have been having for a number of years. I suspected I may have PD, but had been to see a number of neurologists about the various symptoms I suffer from and had a number of tests but nothing had shown up. I had also recently lost my son, so I was dealing with that too. I was given a lot of support by people on here, and even had the privilege of meeting a couple of you.

 Many of you encouraged me to try and see another neurologist, but at that time I was exhausted by my search for answers and by the attitude of some of the neurologists I had seen. Plus still grieving the loss of my son, so I didn't pursue getting a diagnosis. I just accepted the diagnosis of CFS that I had been given even though I was suffering from far more than just fatigue.

 Over the years my GP has been less than helpful to me and I got to the point where I stopped seeing him about my neurological problems. I was put off talking about the increasing disability I have suffered due to his dismissive manner. I saw him for other medical problems, but I kept well away from talking about the neurological problems I have.

 Over the years I have had increasing problems with initiating movement. I often get stuck when trying to walk and can't move for a few seconds. This is sometimes a problem when I go to reach for something, and I experience something similar at times when I try to talk. In recent months I have had problems turning round if for instance I'm in a shop and my wife calls me from behind. I struggle to turn around and feel very unstable. 

 Last week I had to go to the doctor's because I was suffering with pain in my right arm and hand. I was able to see a different doctor than my usual GP so I took the opportunity and mentioned to her my problems with getting stuck. She briefly examined me and said from what I had told her about getting stuck, my slack expression and my problems with handwriting ( she asked about my hand writing and I told her how I find it difficult to write as my hand seems to cramp and the letters get very small) she thinks I may have PD. She is now referring me to a neurologist.

 I am both pleased I am being referred to a neurologist, while a little apprehensive after my previous experiences with them. I am also aware that some of my other symptoms may not fit PD. Not that I want a diagnosis of PD, I just want answers as to why I'm getting increasingly disabled and to not get fobbed off as if I'm wasting their time.

 If it does turn out I have PD, I was wondering what type of effect medication is likely to have on my symptoms, especially my mobility. Is it likely to be dramatic? I'm particularly interested in hearing from anyone who struggled to get diagnosed and who was diagnosed quite late on in their illness, as I'm interested in how much difference medication made to them.

 I'm still at the early stages of being diagnosed, and I may hit another dead end, but I'm trying to be optimistic. As I said I don't want to have PD, but I do want answers. If I do have it I want to know so I can at least get treatment and support.



1 Like

good luck, as theres obviously something very wrong, pd is not a bad option. one test for pd is to give levadopa - it should have a profound effect quite quickly. other similar diseases react less well or not at all.

but even pwp vary quite a lot, most do very well but some can not tolerate the drugs. if it is pd your symptoms are actually quite advanced so levadopa might make a very large difference.


once again, good luck

ps have you had a datscan?


I am hoping I get a dramatic response from any drugs I'm given if I do have PD. At the moment I can only walk very short distances as my legs stiffen up so much. I would be house bound if I didn't have a mobility scooter. What I would like more than anything is to be able to work again, even if it was only part-time. But that may be expecting too much.

No, I haven't had a datscan. Is it common practise to use them in diagnosis these days? 

common where there is doubt if pd