Struggling: Seeking Reassurance

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IamBimbob

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Hi allThis is probably not going to be one of the most inspirational posts on here so look away now if you don't want to read about someone who is really struggling just now.To cut a long story short I see my neuro this afternoon to discuss my EMG results (which were abnormal) and my brain and spine scans (don't know about these yet).I look at so many posts on here and see people being re-assured but often that very same information leads me to be even more convinced I have ALS and in a few hours I seriously feel it may be confirmed or at least take a giant step toward the diagnosis.I read that you must have atrophy to have ALS - I do (and it's proven not imagined).I read that yoo don't have good days and bad days with ALS - I only have bad days for months now.I read that ALS twitches are hardly noticeable - well I got sucked into watching something on youtube which showed me someone with ALS and it looked just like my arm twitching.I know what BFS is - I have had it for 5 years - and I know that what I have now is different.I read about ALS sufferers having certain back issues - I have themI read about the grip problems in ALS - I have them.I read you can't have a clean EMG and ALS - well I have a dirty EMGSorry to be so down. I am terrified at this moment. I have 2 young children and I have tried to stay sane these last few weeks as I have undergone the tests but I just feel in panic mode now and can hardly face the thought of seeing the neuro. and I just don't know how I will cope if it is the bad news I fear.I know there is nothing anyone can do - I just wanted to write my feelings down I guess.
 
Can you walk?can you get out of a chair?do u dream of being the first ever als case diagnosed without clinical weakness?Do u realize there is a billion other problems that can explain ur symptoms that aren't als?If you don't have bfs(which I think u do) that doesn't mean u must have als...its not an either or situation jimb. There is a spectrum of diseases and disorders that can cause your symptoms between bfs-als. Ranging from isaacs to dystonia-dystrophy-to blah blah blah.Your having a tough time...thats a *beep* and i feel for you. i feel for ur family.I like that you vented thats good.but there has to be growth after it. you cant just continue in a cycle of onanism.you need to face your problems down even if your worst fears are confirmed the world will still spin and you'll still have to get outta bed tomorrow..so you might have als. ..you might have bfs..you might die in a car crash on the way to the emg results but your not freaking about that even though its 30times more likely.Go into your results with your head held high... be prepared for any curveball that life throws and know that this whole community is rooting for you.let us know how you get on and maybe read samwidge's story he had a dirty emg and those worrying symptoms too.Iv read ur story.good luck to you sir. il say a prayer for you.let us know how it goes.
 
Good response Darr, I agree with him entirely. Jimb you dont know you have ALS. Symptoms sound very much BFS like to me. And what you displaying as you suggest is different ( is it really?), could be a bunch of stuff and most likely is. The chances of it being ALS are very very very small. Dont go down the road of seld diagnosis, it only self destructive.-The neuros do the diagnosing-they are the experts- not you. keep the chin up and stay positive- it will be all good! cheersRodger
 
Well spoken Darr - we can be so focused on dying we don't live - that was my probem for almost eight months.My EMG was "abnormal" as well - just because your EMG doesn't fall within the boundries of the "norm" doesn't mean that something sinister is going on. I understand what "different" feels like. We get so focused on one set of symptoms that we're used to that when something else pops up - it twists our noodle. This morning I couldn't feel my arms again - and then my right eyelid seemed to be "stuck" - it didn't feel normal. I had to choose - I could let it destroy me, or i could accept that it was just something that is part and parcel with BFS. I chose the later - and i'm going to have a great day.I am completely confident that BFS has all of my nerves on high alert, and from time to time they will affect new / different areas. I can live with that. But I sure wont allow myself to stop living based on something that hasn't happend yet.I pray the report brings you peace.Rob.
 
Come on you guys :confused: There could be a few reasons why Jimb hasnt reported back. Lets not label him as being diagnosed with the nasty. From his symptoms, it could have been about 150 different things going on with him, including nothing serious or sinister. They may have very well have told him that he had nothing serious going on and he may be too embarrassed to come back on yet and admit that his worries and fears were un-warranted. He was not really a very active member, so they may have cleared him of anything sinister, and he was so happy and relieved that he hasnt even thought about coming back here yet to let us know he is ok.Lets not twist this situation, the guy has 11 posts, come on now, this board is not everyones first thought, it just isnt.Take care everyone, its almost Christmas!!!!! I'm so excited!!!!!!! :D) Robynn :D)
 
Your´re right. I don´t really think he´s got the big nasty. Not after 5yrs of twitching.He was probably cleared of having anything bad, went out to party and didn´t make it home yet :D)
 
I agree with Robynn guys, give the guy a break, This board is not the life blood of eveyone that posts! I am sure it will be all good ( 1/2 bottle full guys!), and he will get back to us ( if he wants of course he may choose not to) in due course. Maybe he is busy getting on with his life! Perhaps PM him if you feel the need- I dont.see yaRodger
 
Well I think after his posts and willing to share with us his feelings, reassurance etc...he would have came back if the news were not so bad. Maybe I am paranoid but in the setting of his symptoms...I so hope he is well
 
If you read the last sentence it states he just wanted to write his feelings down. Lets face it, almost everyone on this board has felt the way this person has even after seeing docs getting back test results and the like. We all diagnosed ourselves at one point or another and fortunately we were wrong. Lets let the Pro's diagnose this guy and just stay positive, it will help all of our twitching.
 
All right everyoneLike Robynn has said- as well as everyone else has said- Lets not get ourselves concerend and over anxious-If he has had a worse case scenario diagnosis- then we all are very sorry of the fact and are still here for support -We also must keep in mind that it can happen- the odds are stacked against it but lets face it it can happen-and surely we all hope that is not the case here for Jimb-We also have to recognize the possibility:that he posted here only to stir up the pot- you know -get us going with our own insecurities and anxieties so we need to do ourselves a favor here and not get ahead of ourseleves. just err on the side of cautious and Hope all is well for JimbDavid
 
Hello everyoneMy apologies for not coming on here sooner. Things have been rough for me but I appreciate I should have come back on sooner.The neuro appointment was inconclusive.I have abnormal EMG, abnormal reflexes in one leg, MRIs are all clear. He wants me to have a lumbar puncture.I am afraid I was so worried in the consultation that I did not ask many questions. So there are questions that I should know the answer to and I don't - which I assume will be cleared up at my next appointment.My overall take on it was that ALS is not ruled out but unlikley, whilst MS or something else is now being looked at.Again I am sorry for my posting on Saturday. I was feeling awful and did not know where to turn and just sort of posted it all on here. In hindsight I should have emailed myself and deleted it later.I am really sorry that people take offence that I have not re-assured anyone on here since I re-registered a few months ago but in my dark and difficult times recently I have not been thinking straight enough to be of much use to other people.When I was diagnosed with BFS a few years ago I found it far easier and rewarding to re-assure people when I was out of the woods but I think in the grip of much more fear this time it has been harder.Thanks to everyone who has sent me PMs in last few days and those who put supportive messges on here. It means a lot to me that you were concerned and I hope you don't feel let down by my late response.I don't think I will post on here again after what has happened but I wish everyone the best and I will still look on here to get support from other people's threads and messages.
 
Jimb, I am sorry that you are going through such a dark time rite now, I really am. But please do not interpret my postings on this thread to mean that you were not reassuring anyone was something bad, I only meant that at this time you were posting for your self because at this moment that is what you needed. I was only trying to calm the fears of some of our more anxious readers who tend to jump the gun occasionally. We do on occasion have some posters who do like to just stir the pot, and we never really know who has a legit issue or not until we hear back from them so I apologize if anything I or anyone else said was offensive to you personally and I hope you understand. Once again, I am sorry. Please feel free to post for any support you may need in dealing with your situation.We have a good group of people here who really do care alot.Take Care JimbRobynn :D)
 

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