Good News: All Clear on Neuro Appt!

Highlights Only
U

urgflo83

Member
Hi All, I promised a report on my neuro appointment - and here it is...I GOT THE ALL CLEAR!!! I have officially joined the BFS club!I didn't realize what a top doc I got referred to. He is a sr. professor of neurology at one of Australia's top med schools, so I was confident I was seeing someone who knew his stuff! He read through my referral notes and noted that "I had been spending some time on the net". I was worried this would put him into the wrong frame of mind for our exam. But, he didn't make any negative comments about this. He asked lots of Q's related to MND symptoms. The only issue I raised during this part was that my left arm/hand don't seem to work right, and that my arm seems to grab/fatigue during fine motor skills actions a lot quicker than before all this started. I showed him what triggers this, and he seemed to smile and nod as if to say, "Yeah, you and everyone else!" I guess I took that as reassurance #1 in relation to my symptoms. We talked about the twitching. I told him that I understood that everyone twitches, and that in most cases this is benign, but what worried me was that my twitches could be brought on by placing my hand on a muscle all across my body. My thigh, my neck, my arm, etc. He said that the ones that you can bring on by pushing, slapping, etc, are not the ones you worry about, it is the localized twitches that occur by themselves that are the ones you worry about. (I know this runs counter to other advice received, but I'm just reporting what he said). His general demeanor during this phase was nice, but he seemed very relaxed that I was another benign twitcher. I wasn't sure whether to be concerned that he wasn't taking me seriously, or to be relieved that such an experienced guy had already sized me up and pronounced me OK.We moved on to the clinical exam. You all know the drill. The only issue that came up was when he was testing my arms, when he stopped and looked at my left arm and said - "Looks like you've got some tennis elbow or something here". I reminded him that this was the arm that I mentioned that I have had issues with. I tried to show him where the twitches are prevalant, but couldn't trigger them, so he moved on. He didn't seem worried. All went fine. At one point he told me to lean my hands up against the door, but told me not too push too hard or I would push the building down given how intense and hyped-up my strength actions had been during the exam!After all was said and done he sat down and announced that he couldn't find anything wrong with me, and that I don't have MND. He said that he sees lots of people who have what I have, in fact he said he "see hundreds of people like me for every one MND patient". (I wouldn't take that ratio as exact, I suspect it was more of a generalized statement.) I asked if he thought that an EMG would be necessary as further evidence of his dx. He recoiled and said no, that would not be necessary. In fact, he said "EMG's can be misleading". He said that an EMG is only as good as the person doing them, and that they are prone to mistakes and mis-interpretations. (Once again, I know this is counter to other's advice, but I'm only reporting what he said.) With that, we moved onto small talk...his daughters go to the same school as my girls...he used to play professional rugby for Australia...etc.I guess it went as expected. I knew I would pass the clinicial exam as I had been self testing non-stop. (I know, I know...) I was a bit numb when I left. My logical part of the brain said, "OK, you are officially ALS-free, get on with your life". My emotional part, said (much louder): "Maybe he didn't take you seriously and just went through the motions....Maybe this is at the early stage, and he just missed it....Maybe he mistook "tennis elbow" for deterioration in your muscles from something worse.." It would be VERY, VERY easy to go there. BUT, I had made the commitment to myself and to my family that I WOULD accept whatever dx I got. It is hard, but I have been using all my mental strength since then to force my mind and body to accept that I AM OK. Since then, I have noticed my body relaxing (slowly but surely), and that I have been able to think of other things for the 1st time in weeks. I have also noticed that some of my symptoms have begun to subside. For instance, my legs have been "buzzing" non-stop for weeks, but have pretty much stopped. I now think this was my total stress tensing of my body/muscles, and once I have allowed my muscles to relax, the legs have begun to return to normal. Still getting the other twitches though..will need to learn to live with them.Well, I also committed to myself and my family that I would stay off the net on this topic, so I will be signing off. Maybe I will return once I've "gotten healthy" and can come back and contribute without leading myself back down that dark hole of anxiety and fear. My advice for all is to use every ounce of mental strength that you have to FORCE your mind and body to accept your doctor's DX. Also remember that no-one here has ever come down later with the bad stuff. Those 2 pieces of info s/b enough for you to move on with your life. You owe it to yourself and everyone else in your life. I've accepted my good dx. It's not easy, but I will not let the bad thoughts own me again. I do realize there is now some very, very small probability that there is something the doc missed, or that IT is in its early stages, but I won't live my life that way. If, God forbid, something bad happens 6 mos, 1 year or so from now, so be it. I will live my life as before without worrying about those small odds. I hope all of you will be able to do the same soon.God bless you all and best wishes for a healthy happy future,Chris
 
Now what I really think you should do is get an appointment with a psychiatrist and talk about this. It's better to catch on before your mind begin to wander. You've just went through a, for you, traumatic experience and consulting a psychiatrist (either for cognitive behavioural therapy or psychodynamic) to deal with whatever it is that is causing your health anxiety. Do this now. I worried alot about getting HIV couple of years back (which I didn't have) and I thought about consulting someone about it but didn't. After that it's been testicular cancer and now this. Especially since I see you writing that you have a part of yourself that distrust the doctors diagnosis and still wondering if everything went on OK. Even if you say that you will try to mentally accept what the doctor diagnosed I still believe that inner doubt will bug you later on in life. Seek professional help from a psychiatrist to help you get rid of those negative thought patterns.Best RegardsFredrik
 
Bedan - thanks for your post & advice. You're right in that I did leave the neuro's office with a bit of doubt. I wanted to be upfront about that with everyone because it is the reality. I think we all have that & I think it is best to admit to that as I think it is healthier than pretending that we are 100% convinced after a 30 minute session. I have seriously considered getting some professional counselling. I discussed this vy briefly with the neuro as well. I believe that I can get over this through my own willpower and mental strength. I need to turn all that negative thinking into positive thinking, so that I can turn this around. So far, so good. I do realize, though, that if I can't do this on my own, and I do return to that bad state again, then I could probably use some help. I have committed this to my wife as well (who also initially thought that seeing a psych w/b good.) I know that many people here do need a professional to help them get over this, and that my approach is not for everyone. But I belive our minds are powerful and if we focus them the right way, we can achieve most anything. I will give it my best, and I'm very optimistic, but will also be realistic if I can't do this on my own. At any rate, thanks again and all the best.Chris
 
Chris:I'm so happy to hear that your appt went so well, of course I knew it wouldn't happen any other way!! Please try to banish any lingering doubts from your mind. You got the best news possible from someone who really knows what he's talking about! I am truly hoping that I will be fortunate enough to have the dilemma of how to accept good news from my neuro (on March 6!). ;) Thanks for your supportive posts, and best of luck to you now that you've got the tools to shake off this NMD thing! Enjoy!Joanne
 
hi,thats sounds perfect. it can take a little time to sink in that this bizarre syndrome is benign, we go away and we still twitch so feel like nothings been cured, but the thing is we just have to live with it and the busier the better. dont look back your good to go. :) sharon
 
Wonderful Chris! I've had BFS for over 30 years, (happy years---worry gets less as time goes on!) I've never had an EMG as my neuros never felt I needed one, (perfectly normal exams). This was prior to the internet; I didn't even know about EMG's. I have insisted on tests for other health issues, when the physicians didn't feel that I needed them and I regret doing so, i.e. 2 abdominal ct scans. Now that I know about the radiation exposure they caused, (when I really didn't need them), I wish that I would have listened to the doctors! A normal neuro exam from a reputable neuro rules out serious disease that involve fasiculations. Enjoy your life! Best Wishes, Denise
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top