Quote:
Originally Posted by Kiwiboy
Well, I feel I have come up against the brick wall that is getting a diagnosis. Unfortunately, or fortunately depending on how you look at it, I am not presenting with any obvious or 'typical' Neurological Symptoms. All I have is burning and pain which can not be seen and according to my Neurologist this morning, can not be tested for. He did not want to conduct ANY further tests at all.
He conducted a standard basic Neurological test on me, as I had at the ER the other day. And as expected, all presents quite normally. So in the eyes of a Neurologist, they say there is nothing more that can be done or tested for to get to the bottom of the all over fluctuating burning I feel along with the pains in my hands. Once again I am told to address my anxiety and that I should see a Psychiatrist. Show me anyone who has physical pain and is continually told it is "in your head" and I'll show you someone who feels they are going crazy! I asked for viral testing, MMA and ANY other testing that might be useful, and he said there really were no more roads of investigation. My heart sank.
I asked the Neurologist directly "so what is causing this burning?" to which he replied, "All I can tell you is I can't find a Neurological basis for it" As with the previous Neuro I saw, I asked him to read the Pubmed article on Ganglionopathies etc and he said, he didn't believe I was suffering anything like that, when I asked him on what basis, he said it was because I wasn't displaying any of the other symptoms, loss of pinprick sensation etc.
So where does this leave me? off to see a psychiatrist for my physical burning pain? I am just supposed to accept this and get on with life? I have tried to entertain the thought that the anxiety and depression associated with this *could* be causing the burning, but the feelings are just too constant, too 'real' like I have acid on my skin sometimes. Is this at all possible? can this just go away? It doesn't feel like its decreasing, rather it's becoming more a part of daily life for me. Which is a very sad realisation.
What makes it hard is, I am losing the support of my family because they are all inclined to go with what the Neurologist says, some might say well, fair enough, but just because he can't explain what is happening, doesn't mean there is nothing happening and I'm the only one who can feel it, it annoys me that you can't see pain. But I am expected to go on as if I'm not in some discomfort?! And they all just want me to get help with my 'mental state' which is nothing other than extremely concerned for my future state of mind from being continually worn down by these symptoms.
I don't know if there are any more suggestions that can be made, but I live in hope that this may come right as a life with this all over burning, is no life at all.  |
Many of us have had to see numerous neurologists in order to get the right diagnosis. There is a saying that a physician friend of mind always says: You can't make a diagnosis unless you think of it. Many neurologist don't venture outside the box. See someone at the neurology dept of a medical school or any other facility that has a good reputation in the treatment of pn, like Cleveland Clinic, Mayo, Jack Miller Center for PN in Chicago. It is highly unlikely that you discomfort is imaginary. I am a psychologist and rarely, if ever, did I see anyone presenting symptoms of pain that were imaginary. It would have to accompany a psychotic episode which is pretty hard to miss. Your anxiety and depression could be secondary to the neurological problem. In other words, developed as a result. If your symptoms were caused by anxiety and/or depression, then treating either of those would make them go away. However, your neurological symptoms alone don't fit the typical profile of these disorders. There would usually be a constellation of physical symptoms and not only the ones that you describe. One important question that I would ask to rule out a psychological cause is: Prior to the onset of the symptoms were you undergoing stress of the nature that was unusual and were life events occurring in a way that felt out of your control. Particuarly, were there any significant changes or losses in your life?