Good luck with your appointment. I hope your doctor is a good listener, takes you seriously and that you finally get the answers you need.
well i see my neuro today i am nervous. He is one of the top neuros from the famous Walton Centre in Liverpool UK. Like you I am praying for answers. I wish you luck annie and will post later with some answers HOPEFULLY !!!!
You're welcome. Soul-destroying is exactly what it is. I have found comfort reading about other people's experiences with doctors on these boards. I think there are a lot of factors--women are definitely treated with less credulity than men (there have been studies done on this), autoimmune diseases are definitely hard to diagnose (whether neurologic in nature or not), and anyone who also has a history of an anxiety or depressive disorder can forget it--it absolutely colors the doctors' thinking.
This has been going on so long for me as well that I have at times doubted my own credibility and even sanity, however momentary. The anger and frustration I feel is ongoing, though. I have seen four neurologists in the past 7 years (not counting one I saw way back in '91 for Horner's syndrome).
The one I saw while living in PA in '99 had the worst bedside manners of any doctor I have seen thus far. He absolutely thought I was making the symptoms up. I saw him three times and at the last visit he said, practically yelled, "your muscles are not weak!" I said "If my muscles are not weak, why does my mouth droop (even he acknowledged that much) and why did I have sudden-onset semi-paralysis almost unable to walk, inability to speak and then slurred speech?", and he said sarcastically, "I don't know, maybe you had a mini-stroke," and walked out of the room. While seeing this guy I tried repeatedly to get my records from the neurologist in Florida I had seen for the Horner's back in '91 so I would have "evidence" that I had a neurologic event prior to all this and so the neuro in PA would take me seriously. No such luck--the FL neuro's office kept telling me over the phone that they couldn't find my records, which I have never believed for a minute. In 2002 after moving back to Florida they called to tell me they were purged (after another doctor requested them). I guess they just suddenly got "unlost"-how convenient-and then they purged them into oblivion.
The last neurologist I saw here in Florida two years ago was a real winner--when asking me questions he actually changed what I had written on the forms I filled out (the dates when symptoms started, switched the sides of the body (right vs. left), etc.). He was trying to "trip me up" to see if I knew my own history or if I was making it up as I went along. It took me all of about two seconds to figure out what he was doing. At first I thought he might not be able to read my handwriting but then I realized he was just an ---, and I sat there absolutely incredulous! He really must have thought I was an idiot. He was from another country and I'm not sure if this is standard practice where he came from, but I have never had this done to me before. I'm hoping and praying for better when I go to Mayo next month.
Thanks annie that is part of my plan. you just get fed upof felling that drs think you are making it up. this can be soul destroying. thanks for your comment debs44
Debs44,
If I were you I would try to get the actual film of your past C-spine MRI that showed a lesion and take it with you to the neurologist you are going to see (if this is a new doc and he/she has not seen it yet). You can call the MRI place and they should have it in storage and let you sign it out and then return it later. I also would type up a list of all your symptoms chronologically (when they started/if still present, etc.) and be as concrete/clear as possible in describing them and take the list with you to give to the neurologist for him to read. I would also include any symptoms that are unexplained and that you think might be related, not just stuff to fit in with the diagnosis you think you might have. Sometimes there is more than one thing going on, and that might be the case with you, or seemingly unrelated symptoms might be related.
If you are anything like me, you become less articulate in the doctor's office because you have acute anxiety/awareness of not being believed. If one is treated as non-credible by doctors then you are going to feel defensive/angry every time you go to see one, expecting the same treatment, and the endless cycle continues. So that is what I finally just did (with my PCP) after years of disgust, anger and incredible frustration--I typed up a concete list with dates, specifics, etc., regarding my symptoms and handed it to my PCP, and now I am being referred to neurology dept. at the Mayo Clinic in Jacksonville where hopefully I will finally get a diagnosis--whatever it is.