Hi Jamiet,
I'm another one on that "not yet diagnosed but seeing the neuro at an ALS clinic" list. Funny you mention that clicking thing. I get something like that from time to time...it sounds sort of like something dripping but comes from in the skull. I first noticed it some time after having some crown work--long before I had any of these MND symptoms. I figured it is from something in the eustachian tube, since mine tend to block easily.
IMHO it is best to avoid pointing out to the doctors your visible physical symptoms. Let them notice on their own--which they should be able to do. I know I've gotten to the point where I note every little thing that *seems* different, but I'd rather have an objective person notice it and ask me about it. That way I know it is not in my imagination. I think that when people start pointing out every little thing and acting very agitated about it, the doctors size them as hypochondriacs.
One of the things that strikes me after reading so many testimonials here, and listening to what my neuros are telling me, is that there seems to be quite a few people around who have this malady that we might call "on the verge of MND". Some people get pretty far into it too (like some very obvious loss of the use of muscles) and still do not show up on EMG. So they don't get diagnosed. And it can go on for a long time. My first neuro told me he thinks I have "bulbar palsy" because all he could really see was vocal chord atrophy. After watching me for 3 months and not being able to find a cause he sent me on to the ALS clinic. By the time I got there, things had gotten somewhat worse but not enough for the neuro to provide a diagnosis. She did note *some* minor brisk relexes--which was a change. Also some balance problems and tongue scalloping. Evidently it was enough to have me become a patient (I go back in 2 weeks when she is expecting to decide on lumbar puncture after reviewing all of the latest labwork). This has been going on now for almost a year (which is the blink of an eye compared to other stories I have heard here). So get ready for quite a ride working your way through the gauntlet. On the one hand you might get "lucky" and get a quick diagnosis of ALS (some luck...huh?) or on the other you may end up floating through the system waiting and waiting to see what it becomes. You can't blame the doctors as there is no test for ALS, just the rule out of everything else and a big enough symptom set. In my case, my first neuro and then the staff at the clinic, really do go out of their way to provide help in symptom relief. I can almost hear them thinking "this poor person is probably on the road to an ALS diagnosis, but I can't tell him that".
At this stage, having seen so many complaining of these "almost ALS" symptoms, I am beginning to wonder if there isn't some environmentally-caused illness going around. And I wonder if we "almosts" don't annoy the heck out of the truly diagnosed people here. But they do seem to put up with us! :-D
I am taking one day at a time because each day that comes without loss of the use of a limb or lungs or throat is something to be savored. My legs are stiff and crampy but they still work. I can't get as much done on the weekends as I used to...but I can still get things done. I eat a lot more slowly than I used to...but I can still eat. And I can still drink some tasty ales! With any luck, I can make this last another ten years to retirement before I get truly disabled. That is the kind of hope that we "almosts" have and it is sad to hear the stories from those who clearly do not have that kind of hope.
DavidGL
