Questions to Ask at Neurology Appt

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Ernzo88

Active member
I have my neurology appointment on Tuesday and would like some input into what questions I should be looking to ask. If anyone reads my other recent post (any single limb twitchers) they will get an idea of the current state of play,however I have been noting my symptoms/changes since they started and if anyone wishes to have a look,just ask and I will post this timetable of events/symptoms.To be honest I think that this trip to the neurologist is going to do nothing but just confirm that I have ***.
 
Hey, Noodle. I have read a few of your past posts, and they are almost identical to hundreds of other posts that I have read over my tenure here, on bfsforum.com. There is absolutely nothing different in your symptoms then anyone else that has tripped over this syndrome. You are totally fine! The neurologist will tell you this, and there aren't any questions to ask beyond that. You can keep going to him/her, or find a second, third, fourth opinion, but it will lead you to...uhm, well, your health. My recommendation is you skip to being your healthy self and start having fun. You probably won't be able to do this at the moment, but I let this information float through the cyber-ether so that at some future time, you may have more positive realities stacked up against the negative notions.Basso
 
I know you both mean well but given the nature/location of my problems,the likelyhood of it being benign has decreased and as a result the chances of it being *** have increased. Whilst the negative signs vastly outweigh the good signs,i find it very difficult to see it being something benign.I know that may seem negative but I just can't find anything to make me believe that it is BFS or anything of that nature. Believe me I would be a happier man if I was twitching all over. BFS does not kill,*** does.
 
Noodle, you are too funny. I wish I could remember all the people who wrote about their imminent demise, just like you, and then came back a few months later to say how great they were doing. That'll be you someday, whether you have one limb twitching or all four. You aren't exotic and you don't get to be the "one" who contracts als. Sorry to burst your bubble, bud. Lots of people twitch in one limb, one eye, one finger, one toe and it didn't lead to anything but more twitching. Just a little bit more positive vibe being thrown your way, Noodle. :cool: Hey, totally great to hear from you too, Zeke. :D) Basso
 
Noodle....to be objective I went back and read all your posts. Your sxs jump around to much to be ALS. You have pain, twitching here and there. Your tired then the sxs seems to change then you have back problems then something else. It is plain to see that you have severe health anxiety. That may explain your weight loss that is in of itself not uncommon. When I first began my BCFS journey several years ago I dropped thirty pounds just by thinking I had MS then ALS then Scleroderma then Sjogren's. I went to all the doctors and have to this day one of the most extensive medical files on record on this board. I put my documented tests file and it is about 1.5 ft tall. At last count I saw 40 doctors 30 of them being specialist. You know what? It was BCFS. Please go back and read some of my posts maybe you will see yourself only I was 100 times worse in sxs. I mean I had everything in the medical literature. Point is you just don't describe the markers for ALS. You describe strong anxiety feeding BFS. I wish you could see your specialist sooner well I guess the 25th you will get your answer. I'll bet you that the neuro will boot you out of that ALS mindset. When that happens be very happy. You will always have pain come and go if you have the BCFS variant like me. You just get use to it and you will start living your life again. I won't lie it will take some time but you will be back on this board in the future and someone new will post and you may just see your past self in that person. Good luck!Zeke
 
The thing is Basso is that as many people have mentioned,*** is a disease of "Weakness" not "Twitching". The twitching only comes after weakness and that is how symptoms have progressed in my leg:-Strange feelings ---> ache ---> increasing weakness & balance problems ---> huge increase in twitching. If thats not cause for worry I really don't know what isZeke I think you have misread my posts. I have never said I have problems with my back in terms of "This" whatever "This" is. What I did mention is that in the last 5 years in which I have had numerous health issues,one of these was the fact that I had a siezure and in the process fractured my back.The symptoms have NOT gone all over the place after the first few weeks. I had a couple of twitches (again mainly in my right leg) some ache/fatigue in my legs (again 90% in the right leg) which went and continual and worsening weakness and increased twitching in that one and only limb. As I said If I had symptoms all over my body I would be much less worried as I know that *** does not work that way,but I defy anyone who has worsening problems in just one area not to worry,especially when that one area is a known "Starter Point" for ***.I am objective and logical and reasoned thinking makes me come to the conclusion that the symptoms are far to specific and localised to be able to rule out the possibility that there is a fair chance that it is ***.Believe me I wish it is something such as BFS,Mineral dificencies,Restless leg syndrome etc but all my research has pointed to that being highly unlikely given my symptoms and those that would acompany those conditions.My weight loss could be down to many things including not eating on a regular basis,mainly because whatever is going on is making it a real struggle/effort. However even if it was anxiety,I have had that in the past and it has NEVER caused any change in weight,its the weight loss that causes the anxiety,not the other way round.How can you say I don't show the markers for ***? Last time I checked,weakness,fatigue and balance problems in one limb were a strong indicator that *** is a distinct possibilty.One other thing,lets just say that i'm completely wrong and this is BFS. I have effectively not been outside my front door in FOUR MONTHS and that was BEFORE things progressed to how they have been over the last week. If I am destined to feel the way that I do at the moment for the rest of my life,I may as well shoot myself now as I have had no life since this came along and people simply saying do what you can is not going to help as I can do very little,for example because of the way I feel I have not washed/dressed in FOUR or FIVE days! Does that give you a greater understanding of how severe my symptoms are and how they are affecting my quality of life? Again I defy anyone in that condition not to be worried.As for the size of your medical records that made me chuckle. I have more than that in my house let alone the hospital records and my mothers was about 8 times as much as that 25 years ago. Believe me I have seen enough of hospitals,Surgeries,hospices to know what goes on so I know when there is good reason to panic,I have already had two possibly life threatening things missed over the last 5 years,I do not need another.
 
ALS twitches require a special light to see them since they are so fine in the vast majority of cases. NOT huge twitching as you just described. I have had:"Strange feelings ---> ache ---> increasing weakness & balance problems ---> huge increase in twitching. "They go away then it all comes back to some other part of my body. Worry if you want but I wish you would stay positive because the more you focus your description of your symptoms the more it moves away from ALS.
 
Well your description of your sxs is tightining up. You are being more descriptive. I hate to hear you are suffering and I would be worried. I will leave it to the neuro if I may be so bold to say so. When I first started it was my right leg that was shaky, weak, balance problems, weight loss, random twitches, anxiety plus all the doctors visits. Nobody could tell me what was wrong and I mean nobody untill I went to the neurologist. I can only hope your are in the same boat. Wish you the best. Are you on any anti cholesterol drugs? I once saw an episode of Mystery Diagnosis where a man described similar problems you mention. I am not saying you have and I simply don recall what the illnes was but it was not ALS.
 
Sounds like a good helping of depression. If Zeke's pile of medical tests make you chuckle, because your's, and your mother's, is bigger, that should give you some indication that you may have inherited your mother's predilection to worry. Your post is typical of many people who have come here and will not accept that they are fine; and in fact, come with more and more reasons as to why they are doomed. If you don't find someone to help you with your obvious worry then the neurologist will be of little use, as you will not believe him/her. The fact is Noodle, if things were really as bad, and I mean clinically, as you say they are, then you wouldn't be on the Internet posting about them.Good luck at your appointment. In my humble Internet opinion, you may wish to consider some form of counseling to help you over this hump.Basso
 
The reason I am up (its now 2pm) is because the symptoms are making it very difficult to sleep hence the need for tiredness to overcome the symptoms. Yes anxiety may not help but that is a consequence of the symptoms getting worse,not the other way round. I have checked about Restless Leg Syndrome and given the scope of its symptoms it seems unlikely (to me anyway) that it is the cause.I actually resent people trying to suggest that my symptoms may be due too stress and this is why. When the symptoms first presented I was not stressed. The symptoms got worse and I was still not stressed as I thought it could be due to my medication and when that was ruled out I thought it could be my epilepsy,neither of these things worried me. Now however the symptoms have got much,much worse and this is why I am now v.v.worried. When my inital symptoms presented themselves I was NOT stressed/anxious.Spinal problems have been mentioned before but as I said to others,that is not to blame. I had a seizure almost one year ago to the day (morning after my birthday) and in the process I fractured my back. Since then I have had regular check up's & x-rays and nothing has been found. Also I had some nasty symptoms a few months back and when I saw the same neurologist I am seeing this tuesday,they did an MRI of my head and spine and nothing amis was found then.When I first did the strength testing,even on the first time I noticed weakness in the right leg and whilst I aknowledge that they might not be helping,continual testing is not what is behind what is going on for the same reason I mentioned above,in that weakness presented before I started manic testing.I know people are thinking that i'm some kind of nutter that is worrying too much but what I am anxious about is based on facts,not any kind of stress,anxiety,excessive testing or anything of the like. Its just based on my symptoms,where they are present and how they have progressed,nothing more.One other thing I have noticed is some possible atrophy on that right leg in the rear area of the calf muscle. Everything is pointing in a direction I do not wish to go. Believe me a few weeks ago,even though I was concerned I was still willing to entertain it possibly being due to BFS. Right now I think the chances of it being something as benign as bFS is remote and decreasing in its likelyhood day by day.
 
You haven't noticed any atrophy. I'm sorry Noodle, you just don't get to be the person who goes down the als shytter. The names of those who came to this site convinced that they had atrophy, bulbar als, or one limb twitching (hence; doomed) are legion. None of them went on to become ill, or to have the nasty. What they did do is get over their fears at some point, realize that their body did odd little sensory things, and stopped thinking about this site altogether. That's the trajectory of BFS. When I began twitching I wanted everyone to know about it, but now I wouldn't even bother to mention it to people. It just doesn't excite me any more to have bfs. My left leg still feels bizarre, everyday, yet it is strong, works well, ya da ya da. I remember Caroline, she was positive she had atrophy. She was sure she wouldn't live to see her kids grow up and her husband was getting fed up with her being so terrified. Yet, is she here, anymore? No, she came back with one very nice last post to tell us she was doing great, life was awesome, and that she and her hubby were boinking like rabbits. :D) I hate to tell you, Noodle, but I've seen it all. You speak about not trusting your doctor; which is another way of saying..."Yeah, but..." in the face of incontrovertible evidence that you are fine. Your sensory symptoms are real, not in your head, but that is all part of bfs. I know, I've lived with it for over four years.Have a super duper day.Basso
 
Basso how the hell can you say I haven't noticed any atrophy? You can't even see me! I am telling you what I see with my own two eyes,whether you believe that or not is another matter entirely.Just because nobody on this site has developed *** it does not mean someone won't. Joining this site is not some kind of incoculation against ***. You have no way of telling what I have,for all you know I could well be the first member of the BFS Board *** Club.You are not comparing like for like. You say that your leg is strong and functions normally,mine is not strong,is getting weaker and is not functioing properly. My symptoms are much more severe,just because your's have not turned into something has no bearing on what my nastier symptoms will turn out to be.I doubt you read my posts as I have mentioned why I don't trust my doctors on a number of occasions. They have missed 2 potentially fatal conditions in the last few years. Factor in the fact that a number of my family members have died due to medical negligence and you will see why I don't trust the doctors. If you place your trust in them 100% then I pity you as its quite possible that you will be complacient when it comes to what they tell you and it could lead to nasty consequences. However if i were to trust my doctor then I would still have reason to worry as my GP refered me to the neuro because she said my symptoms could indicate some form of MND.The only evidence available at hand is what I tell you which is based on what I feel and see. You have no evidence of anything and it just comes across that you think I may be lying,which I find highly insulting.Its hard to have a super duper day when your leg it twitching like a SOB,it feels very weak,you have noticed atrophy and you have not washed/dressed in five days.As I mentioned before just because the odds of something happening are huge it does not mean that it won't happen to you. Recently a woman on TV was diagnosed with something in which the odds of getting it was actually larger than the population of the world,however she still got it. Maybe she had someone saying the same thing to her? Also no offence dude but you have obviously not read all my posts and read something that was not there. The reason I had the siezure was because I have epilepsy and it was the first major seizure I had. It has been diagnosed and controlled in terms of medication,the seizure has zero to do with what is going on at the moment. The MRI was for something completely difference for which I had some other symptoms,I had the test,nothing was found and the symptoms went away,again it has nothing to do with this. As for the x-rays,don't make me laugh! x-rays to check that my back has healed properly holds no fear for me,I live with a genetic blood disorder for which I have had lung surgery. It could kill me but it might not,even that does not bother me,so please stop with all this stuff about "Stress" being a possible cause.Well if there are many reasons for the exact symptoms that I am displaying I would like you to point them out to me as in all my research I am yet to find a condition which would account for all my symptoms. The only one I have found is the one I am worried about.Like I said to Basso,you are not comparing like for like. Yes your friend may have had atrophy,but did he also have twitching,fatigue,balance problems,weakness etc or just the muscle loss? Unless he had the EXACT same symptoms as me then any comparison immediately becomes v.difficult.While I am at the Neuro exam all im interested in is two things:-To find out if I have *** and if so to get myself onto the correct meds,which I have already researched,just in case.Or If the above turns out to be I don'tTo find out what the hell it is and to try and get something to cure it or help with the symptoms as in my current state there is no chance of me having any kind of life.
 
Well, if it is ALS. do a medline/pubmed search. An article was published this month in a major journal from some Turkish investigators on the use of stem cells injected directly into the brain stem. It actually looked like it was working to stop or reverse the symptoms....I am not being sarcastic, if for some ungodly reason I end up with ALS, I would be flying my ass to somewhere were they will try something like that on me.Your symptoms do sound bad. But as I said, there are others who have mostly focalized twitching and weakness....and EVERYONE on here has symptoms that are a little different. TompeteA has a very weak hand, Aaron the moderated has had local weakness. Others have hot spot twitching in just one spot.Lastly, just for kicks. Go to an anxiety sight and see all the things people are absolutely SURE they have. There are many many forums for people with hypochondria and anxiety. I am not saying you have it. What I am saying is that you seem to be 100% unwilling to even investigate that side of things. Anxiety, Somatization...etc. After you get bored googling medical sites on ALS and BFS and whatever, just poke around those more mental sites and see what people are complaining about.Again, I am not trying to be a jerk, just trying to help you open your mind up to other possibilities.Later
 
Good for you, Noodle, get angry and pumped up, whether that comes from feeling insulted, slighted, or offended. That is all good. Don't you see, you are beginning to step out of yourself, to not feel so defeated; and you are defeated. Yes, OK, you have reasons...yada yada yada, but they are based on what you "feel," what you "think." I hope I am aggravating you, because then you will begin to feel another part of you that cries out for recognition. Right now you think that the sum total of you is a toothache, but around that tooth is an entire body, a mind, and a soul. I have read your story 500 times on this site, and have heard other manifestations of it a thousand more, from people that I have met. Atrophy isn't "Hmmm, my butt looks smaller, or was that dent there before?"...it is a complete lack of "meat" on the bone. Before you said you were worried you might have atrophy, now you are saying you have it...well, which is it? I am not challenging you, but rather challenging those negative feelings that you are channeling. We all have them, and it bites to have some one say they are not real and that life actually is alright. I have read much of your history, at least enough to know where you are coming from, and it is garden variety bfs/pnh, or whatever you want to call it. You can rationalize it much as want, but in the end you will well; albeit miserable. Why not be well and happy? I don't know you, and I get no kick out of antagonizing you. I see what I see, and what I see is the same old thing I have read by other fine people over the last four years. My friend, who unfortunately has experienced atrophy, did twitch; that's why he came to this site. I have spoken to him on the phone a few times now and stayed abreast of his life, as best I'm able. He is a great man and a brave one. Even his left testicle atrophied, but in the face of it all he kept a positive mind-set, and I encouraged him to believe in the miracle of life. We all get down, we all experience misery and when we do our bodies follow suit. You feel weak, but you are not. You will get over this hump soon, and then what a triumph you will feel. If you are not showering or dressing yourself for days on end then it is clear you are suffering from depression of some sort. Let how p*ssed off you feel at me give you the energy to shower, get dressed, go for a walk, and then call a counselor.You have choices you can make, so make them, and stop waiting for the axe to fall.Don't have a super duper day, but do have a good one.Basso
 
No, my friend does not have als, but some other kind of something that while uncomfortable, is not fatal. However, through all his worry about his health he did lose his marriage; which was the most important thing in his life. My view is not more valid than yours, but I have been through this with so many others. Basically, Noodle, people that are seriously ill don't end up here; they have already seen their doctor and got the bad news. We have a bizarre little syndrome that, while confounding, is benign. Cut yourself some slack, and when the neurologist tells you that you are well come back and tell us about it so we can party. :p Feeling ill, down, like something is wrong, sucks; I know that. Been there, done that, sucked so bad there wasn't even a t-shirt. Yet, I also have discovered that through shifting our focus away from the "omg, what if" that our lives become seriously enhanced. It is a small step, yet works wonders.Your journey is your journey, and I wish you the very best.Basso
 
Unfortunately if you try and "Demand" a test over here,they get very touchy as they don't like to be dictated to and tend to only arange scans and the like if they and only they think they are neccessary.I have not showered due to both my physical symptoms and because I just don't have the energy. Everything I do even eating requires a huge effort.As I say,I have a list of my symptoms and when they presented. I have to update it for the last week,which is the week that has seen the most dramatic increase in symptoms. Even tonight I have been having increasing difficulty with my balance and keep falling to my right.Basso just because you have spoken to and listened to many people on here,that does not make you a doctor and able to categorically tell me that I don't have ***. You are doing exactly what you told mpls not to do. Unfortunately the only way anyone is going to be able to tell what is wrong is by testing me. You may think I am well,however as every second passes with my symptoms (located in just one limb) increasing,I am becoming more convinced that it is not BFS and is likely to be something nasty. I mean I have just taken my socks off (please don't barf my personal hygene is usually v.good) for the first time in these last five days that I have not showered and my right ankle has lost some mass. If these things are not cause for worry (whether I wish to worry or not) then I really don't know what would be. Maybe collapsing with blood pouring from my eyes?
 
Time Out !! Noodle... i went through what you are going through to some degree.. i had completely given up and wanted to die so I wouldn't have to wake up and face another day of illness... it SUCKS.. I am not even going to speculate on your diagnosis because you haven't followed through with the proper steps for that..let me just ask you a few questions, and if you can answer them truthfully I think I can help.. if you don't want to answer publicly you cam message me... 1. Do you desire the company of your friends?2. Do you watch television, and if so are you able to take your mind off of your body while doing so ?3. Is your libido intact?4. When you engage in conversation, does the subject quickly turn towards your health issues?5. If you could change one thing about yourself right now, what would it be? 6. What is your worst fear? 7. Do you have an increased sense of room/air temperature, or scared of a change in temperature? 8. If a meteor was headed toward Earth and you only had a week to live, what would you want to accomplish? 9. Do you have a history of obsession to anything? 10. Have you ever lost someone close to you , or even a pet, and if so how did you cope? 11. Are you able to laugh at things that would normally cause you to do so?
 
Alien i know what you are getting at & whilst i would admit i have "issues" they have nothing to do with what is going on. They were going to be "addressed" until I became ill with this and had to postpone.I mean I have just tested my balance and whilst my left leg is fine I am losing my balance almost immediately on my right leg and this has got markedly worse over the course of my symptoms. I also have some atrophy in this ankle at the exact point at which I am losing my balance. I also have other classic symptoms of *** such as tight muscles in the same leg,an excessive gag reflex and even confusion.Unless someone can furnish me with a condition that would cause all the probems I have (especially my balance in one leg) with atrophy when combined with twitching,then the way things stand,I am convinced that I have *** and that i am going to die v.soon. :crying:
 
I'm am completely chill, and with the temperature out today, even chilly. :p I have posted almost 2000 times and never called anyone an idiot for thinking they had something wrong with them; not ever. However, the tenor of debate, of help, should be a consistent one. Giving a message that on the one hand say "you are probably fine" and on the other "maybe you aren't" is not helpful. It creates a negative dimension to the help. There are reasons why people with bfs twitch the way we do, and none of them are sinister. In the time that this forum has been up not one person has been diagnosed with als. Therefore, it stands to reason that those who come here do not follow the same trajectory as those who are actually and truly ill. Do you not see something negative about telling someone to take something as a prophylactic against a disease that they do not have? This spreads fear, even though your intention is no doubt noble. Noodle, you are a unique person. Your loves, your experiences are all your own. However, the story you relate here is a story that has been written many times, and will continue to be so. I told you in the first post that you will not believe me, so I am not trying, in any way, to convince you of your health. I am, however, endeavoring to shift the debate to one of hope, and stacking up the positives that are real, against the negatives which are not.As I say, each of us will follow our own path, but if a little sunshine can drift through as we walk, so much the better.Basso
 

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