Analyzing Neuro Exams Since 1984

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As a rationalist and a researcher myself I try to analyse everything and categorise it.I have now since 1984 seen four neuro's and I think the last of these who was of an age to be contemporary with the first was the most perfunctory in his exam.The internet is a problem, because it is so easy for one to find out from teaching sources what should take place during a thorough exam, and to make it worse I nearly bought a neurological textbook yesterday, not because I wanted to find out more about the tests but because I need a good textbook on neuroanatomy to enhance my understanding of what I am currently researching, in order to better understand what I am reading about brain studies of autistic people.Anyway, knowing too much is a sure sign that I am going to do comparisons between neuros, and reading this board only adds to the dissatisfaction that A did not test Y and B did not test X and none of them carried out test C or whatever.Perhaps what we all need to do is draw up our own menu of neurological investigations, stand there and order the neuro to carry them all out. Essentially I am back at the point of despair, what can you do, when the neuro's are not really interested or concerned, what can you do before they start regarding the whole process as factitious disorder?My conclusions are that it is a waiting game, we are all like Mr Micawber waiting for something to turn up. I have a condition that is causing me pain and discomfort and I have the perception that it is slowly but surely progressing.No amount of CBT is going to change that perception.Why this cognitive dissonance all the time between what the neuro sees, and what you "know" (or think you know) to be otherwise.Maybe the brain scan will result in a big "told you so" indicating there is something that might be the cause, or maybe I will remain in limbo if it shows nothing. It just seems more than co-incidence to me that most of my problems are on one side of my body. Right now I feel a stiffness in my muscles from my scalp down to my toes, only on the left hand side.I just do not any longer trust anybodies subjective assessment of strength, a neuro is just as likely to be off as I am. I want facts and figures and I just don't know where I'll get them.
 
The neuro ordered a few blood tests but I did not pay much regard as to what they were for, the only one I noticed that I have not had for a long time was the ESR, which would indicate if I had Rheumatoid Arthritis or not.
 
BFS/PNH as an autoimmune condition is associated with other autoimmune conditions including Rheumatoid disease. Since you have a family history that includes that issue, it seems like your neurologists should be following that lead. A VGKC test may indicate that your suffering from a companion autoimmune condition and may put your mind at ease in regards to a cause of your symptoms.
 
PlayfulPants - all I can tell you is that you're not alone here. I'm having the same issues and smiliar symptoms. Muscle stiffness and pain with a clear dominance on my left side. Sometimes my whole body is stiff, including my face and my legs. I also have muscle twitches (relatively mild, though, compared to what other people have). The problems definitely are progressive, albeit very slowly. I have a family history of Rheumatoid disease (my grandmother had RA for almost 50 years, my mother got hers when she was 30). My neuro gave me a thorough 70 minute examination but when he didn't find anything wrong with me he refused to give me a full blood-work. At least I know I'm not suffering from something REALLY bad - which calmed me down a bit and made the twitches disappear almost entirely for a while (3 weeks and counting). The stiffness has improved as well, I think.
 
I can sympathise with your frustrations regarding doctors / neuros etc having had very little support / explenation myself.I think the big factor here is that BFS won't kill you, therefore little research time is spent on it.Thats a good thing i know, but like you this condition makes my life difficult with constant pain, little sleep etc. I personally would like some conclusion to it all and a the present that is what is driving me on. If i have to try and get a scan just to possibly get some answers i will try and get one!I find it very frustrating when no one takes this condition seriously though.
 
I totally understand what your going through,but i have learnt several things over the past 3 years or so 1.A little knowledge is a dangerous thing 2.If you dont fit the textbook you wont get a diagnosis and 3.Ignore the symtoms,even if they are progressive live life to the full,enjoy our precious time we have on the planet with our families and use our energies for being positive, the world can be a fantastic place just to spend a week in so im enjoying it while i can.
 
HiI have seen two neuros, i think they were brothers, Tweedle Dee and Tweedle Dum. i don't think i was in for more then ten mins the frist time and five the next. just enough for them to claim their fee. One was on the NHS the other private.Some of these clowns (not all clowns i know)emmmm! should start to teart us as people not idiots.good luck (H)keep your chin up.Chris
 

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