As I said Basso I know where you are coming from but its hard to accept any sushine when your experiences mean that you don't even know what sunshine feels like and if any were to come along I would not identify it until it had long passed me by. You are trying to put a positive spin on things and even I would do the same if confronted with the same things from someon else,however due to the way my life has panned out I never look on the bright side of anything. You have heard of the saying "Glass half full/half empty",well the best way to sum myself up (Please don't say it may be "contributing" as it is not) is that I see my lot and life in general as "Glass totally empty,with someones cigarette stub in it as some other rich,handsome,lucky in love,well liked man walks away licking their lips and laughing because they have just drunk my drink.Possibly a bit long winded but a round about way of summing things up.Alien I know you may think that my "Issues" are somehow contributing to my symptoms,however the range of symptoms,their severity and rapid decline combined with the fact that at the time of presentation I was not stressed makes me believe that they have nothing to do with what is going on.Stress & anxiety would not be causing atropy & associated balance issues let alone concentrated twitching particularly in that area. I am a logical person and everything I know about anxiety,the medical world and my own body,I know that something is seriously amiss and have been proven right,even when others inc those in the medical profession have tried to tell me that "Stress" is to blame. In this case it is not.In terms of the symptoms,yes those are symptoms of ***. In my desperate attempt to find some shread of evidence/other condition that would explain what is going on,I have come across various *** pages with all the symptoms,not just the ones that are mentioned on the first *** page that people find on google or that have been mentioned time and time again on here. In *** all the reflexes are hightened,not just the traditional ones but others such as the gag reflex. As for the confusion/memory problems,yes that is a symptom and a classic example of this was a couple of days ago when it was my birthday,I could not even remember how old I was!!!!!If I have *** which I am convinced I am,then there is only one thing I will guarantee I would do and this is going into meltdown mode. Again please don't try and insinuate this is psychosymatic,but I am scared of very few things but the one thing I am terrified of is death and not just my own either. In the past it was my own mortality that was the problem but recently it has been my parents that has been most on my mind,what with my dad getting older/more health problems and my mum being very ill.I am not a religious man,as far as i am concerned once the lights go out,thats it....... Forever!!!!! That prospect is so terrifying for me,you would not believe. The logical thing to do would be do seek out treatments/trials etc and try to live your remaining days to their fullest,however I think I would just sink into manic depression and my remaining days would be wasted as most of those that have passed have been.I would categorically say that it is not a myriad of different symptoms for a few reasons but mainly because all of my symptoms are conected with one and only one condition. If there was something outside from that I would consider what you say but I dont have some "Different" symptom and also the fact that main identifying symptoms of *** (Twitching,atrophy,weakness etc) are present in one leg and one specific area of that leg,I can find no other explanation/cause to what is going on.I do not want *** but I am convinced based on what I know,what I can see and feel and logic,the only explanation is ***.
Questions to Ask at Neurology Appt
- Thread starter Ernzo88
- Start date
CosmicVisitor
Well-known member
noodle... you have to realize that there have been many that have come before you here with similar complaints, and fortunately there has been only a few I know of out of the thousands that actually went on to get an ALS diagnosis.. one of which(dsiple)actually was later to have been misdiagnosed and turned out to have Lyme Disease.. The other I believe was already told that ALS was suspected by her physician before she came on this site. She should never have been posting here.. as for myself, it's a toss up.. I have peripheral neuropathy so some of my twitching is benign, but some is not. At any rate, veterans of this board will defend the BFS mantra to any end.. myself included.... Why ? because this board has saved lives.. it has given hope and comfort to many who have no clue where to turn to for help as their lives and families are falling apart, and it should not be compromised by unfounded claims and self diagnosis.. it's a BFS board not an i think I have ALS board...I know you have a neuro app tomorrow and I wish you all the best, but don't look to get an instant answer for this.. Please do yourself a favor and write down all of your symptoms and dates of onset.. keep it very simple and short.. this way you won't leave anything out.. When you are asked to perform a physical task, please give your full strength to it... Don't even begin to tell the doctor you think you have ALS... just ask him what he thinks,, but in a suttle way... Don't push him to say something you want to hear.. You are welcome here if you are twitching and will have support here as long as you need it.... in the event you do have some findings, please PM me before you go off in a tangent... I have been there.. my neuro exam was abnormal.. I freaked out... I am still walking just fine 4 years later... All the Best Doug
Doug I know that the odds under normal circumstances would be in my favour but who is to say that i won't be that 1 in 10'000 (or whatever the odds are,don't have the energy to recheck). You have had something diagnosed,quite often having nothing diagnosed is actually worse than having something found,obviously depending on what is wrong.I know many of ther people on here would/are going to defend the BFS diagnosis,but I am sure you can understand that it is easier for long time forumites to do this than newbies,simply because they have had their fears reduced somewhat through the passage of time in which they still have not got much worse/developed any more "Sinister" symptoms.The thing is that I really do need an instant answer as all I will be doing until then is going out of my mind with worry. I mean the nausea,loss of appetite and anxiety is off the scale as it is,without waiting for a phone call or whatever.I have a full list of symptoms (6 pages) and almost all have exact dates,except for the initial problems when I did not think it was neccessary to note them down. I am going to do a simple flow chart in a note pad I have so that I can give a quick indication of how things have progessed.I always do give my all when it comes to tests,in this case it will be no different.Well we will see what happens,however I cannot forsee how I would react on these boards if I did get some bad news. I know that it would be the wrong thing to do,but at the moment this forum is my only source of contact with other people and I need an outlet for how I feel.Take care & ThanksNoodle
Tom I really don't appreciate you calling me a liar,especially in the way that you did. I have already said that in comparison to others I do not twitch as much but when they do come (mainly when I am lying down) they are twitching every few seconds and that this is concentrated in my right leg and in particular the ankle. I have also said that I can't always see or feel them with my hand but I can feel them "Going off" in the traditional sense.I thought about trying to get some footage of them but with above being the case it would be very hard to capture the things,especially trying to use a webcam. If you think i am a liar,do you really think I would be up all night what with the twitches & worry only to have to get to an early appointment. I mean I did not give 7 or so vials of blood today and wait for my apointment full of fear for the fun of it.If you distrust me that much I'll scan my referal letter and the slip for a change in some medication I am taking. I thought this place was only filled with decent,understanding people. From your post I think I was mistaken in that assumption. Also how much I post has nothing to do with you,there are a few others who have posted more than me in quick succession,did you have a go at them? I doubt it.
