Wow! You really do have some high anxiety there, questioner. Calm down! If after 27 years its not obvious to you that you've obsessed, it will never be. So, moot point!
Of course, at one point, those of us who have suffered spreading weakness, spasticity and fasciculations, atrophy and such were very concerned regarding ALS and to a lesser degree, still are until the diagnosed comes (whether its PNS or not).
I'm on this forum because I started out with multiple, mirroring symptoms (throw in a little muscle atrophy to boot) and was looking for answers and support. I plan on returning those answers and support once I know what it is I've got that's been doing the mirroring. In other words, for people like you with high anxiety (for which you take beta blockers?), I can report I had similar symptoms but it turned out to be "PNS". Are you getting my motivation here?
I am also enjoying the fine company of so many excellent people.
This forum has greatly helped to calm the concerns of many regarding their symptoms. Most folk on this forum experience their anxiety being lessened. I still think you will not be satisfied until you are given a diagnosed of ALS and I only wish you to be satisfied in your quest. No malice intended - just happiness and smiles.:mrgreen:
Zaphoon,
I did not say I am not obsessed about possibly having ALS or just the fact of a seeming progression of symptoms and findings; just that I have not been obsessed continuously over these 27 years. I am more in an obssessed mode now, obviously, as apparently are many who come here, judging from the posts. I don't quite get your point - if people aren't worried that they have or might have ALS, why would they have come to this particular forum at all?
I also don't get this point: "In other words, for people like you with high anxiety (for which you take beta blockers?), I can report I had similar symptoms but it turned out to be "PNS".
Are you saying that you hope to be able to tell worried people who come to this forum (like me and yourself at one point, apparently) to not worry or worry so much because your troubling symptoms turned out to be something benign, e.g. "PNS?" If so, that is a nice wish, which I share (for both of us), but you don't have a diagnosis yet if I understand what you've written. Is this correct?
I'm a little befuddled by your implied criticism of my posts; as if I don't belong here. Like you, I also came here recently for answers (if available and support). Like you and like, I presume, most who come to THIS forum, I am worried about my symptoms and concerned that they could mean ALS. Hence some of the questions I've asked, like whether tongue atrophy could be due to things other than ALS.
Is your criticism that my anxiety has not seemed to be lessened by the responses I've got so far? If so, what, specifically should allay my concerns, other than the long history of my symptoms? Yes, that long history does lessen my anxiety, in the sense of giving me hope that this is something else besides ALS, or if ALS, perhaps there will be atypically slow progression. Indeed, many of my questions were precisely to seek answers as to the possibility of some other alternative causes of these symptoms, even including progressive tongue atrophy, if I definitely have this.
Seeking and getting answers may not always allay anxiety. Indeed, it may sometimes increase anxiety. I think what I want even more than reassurance and having my anxiety allayed is for the truth- honest answers about people's actual understanding and experience. I don't expect people here to have more convincing answers than the neurologists for questions about whether this or that symptom or history is likely to be ALS.
Perhaps I should just stop posting on these forums and wait until I see the speech therapist and neurologist, or see if the PLaquenil makes any difference. On top of all else that I'm dealing with, I certainly don't want to be writing unwanted posts and to be in a place where, rather than feeling wanted and supported, I'm feeling that my beliefs should change and my writings (and therefore my presence, as I present myself) are unwanted. Too bad, though, as I thought this forum, by its description and many of the posts on it, is uniquely a safe haven for those with these ALS anxieties; anxieties I've long ago learned are not welcomed almost anywhere else, unless and until one is diagnosed with ALS.
Moreover, to be consistent, I suppose you will also tell others who come here with such concerns that they shouldn't be concerned or shouldn't express them in the way they are expressing them or that their anxiety-tinged posts are, one-way-or-the other, inappropriate.
Even though you still say you hope I eventually get ALS to be satisfied, I continue to wish that you have PNS or some other benign cause of your symptoms.
Searcher
