Help with BFS: Need Advice

Highlights Only
HI AgainWell the good feeling I had after last week's neuro visit didn't last. Today has been an awful day. Strange sensations on my face, especially my lips and chin, and a feeling in my tongue that I don't know how to describe which is a little like an electric sensation all down the left side of my tongue.Today I tried to climb a ladder at work and I couldn't !!! My right knee just wouldn't let me climb, I don't want to have any knee problems but I sure hope that this is some sort of joint issue and not the nasty!.!.!. I'm so scared today. I've gone into hyper vigilance mode checking and checking again. I can't live my life like this but I don't know what to do, the twitching and loss of fat (I guess it's fat) body wide is scaring me too. The sole of my right foot is sore to walk on and my legs feel so heavy after sitting for a while. Also while I'm walking my knee, the same one I couldn't climb with today, is painful when I lift my leg to bring it forward for my next step.Sorry guys, I'm at the end of my rope here and I'm really not coping at all. These tongue and face sensations/twitches or whatever they are have worn me out emotionally today. I'm just an old sad wreck of a person, this would have to be the worst year of my life thanks to whatever this is that I have - BFS or whatever I just don't know.
 
I'm even starting to wonder if I've got Kennedy's disease. I had an EMG in August which apparently only showed PNH. Does anyone know if my EMG would have also shown up something like Kennedy's if I had it?Thanks
 
I'm 34 and had back pain on and off over the last 4 years but it moved to the other side and at times if I am sitting and stand up I can't actually out weight on my left leg due to the pain shooting to my foot but hey I get good days where it's not that bad and that my friend is how you are ! If it was so etching nasty you wouldn't have any good days ! Remember that !I reckon and the docs reckon I have sciatica and the pain is a nerve pain...I run from time to time when I am training and I too have had a sore knee to the point it's so painful in behind the knee cap I can hardly stand on it ... My advice is this.... If you passed you clinical and EMG etc then you need to try to reduce anxiety and stop trying to connect everyday symptoms to mean something nasty...It's all about changing your thought process to a positive one and I understand that it's not easy as I am also working hard at doing the same but I am definitely much better mentally and you can be that way too if you work at it...
 
I have been told that EMG tests are very sensitive and would pick up anything if you were having symptoms related to something bad... But you would also have clinical abnormalities presenting which you do not have ...You need to think rational and let the doctors worry about diagnoses and you worry about beating your health anxiety ! It's good to understand and ask questions but if it was that easy to diagnose people the doctors would not have to study fir years and years ... They would simply be given a computer with google as the home page lolSeriously stop looking ... Your symptoms are mild to say the least... :)
 
Thank you Anxious Guy. I just need a good kick now and then to get some common sense back into me. But there doesn't seem to be too much "common sense" when it comes to this twitching and sensory stuff that's going on.Yes you're right, my clinical and EMG at the time were ok and I've mentioned before that I keep trying to remind myself of this. The trouble is that the way my mind seems to be working I can't get all this out of my head, I shouldn't even need to think about my tests being normal, after a normal test result I should have just been able to move on but this twitching is just like a fly buzzing around that won't go away so it stays constantly on my mind. I'm starting to feel ashamed with the way I feel and this isn't good at all. Yes of course you're right, I wouldn't have days that are better than other days if this was something nasty, if I could I'd buy you a beer for reminding me of that I would. There's clearly some great people on this site and you're one of them. This website is the best too !!!Cheers
 
Man listen... Don't feel bad about anxiety ... I feel anxiety everyday and I worry but hey that's what happens with health anxiety and I have had that since a kid but I try my best to fight it! My big symptom now is I seem to analyse every word I say and I am nervous to the point I am even stuttering or stump bling on words but I am believing its anxiety related ! I have had this feeling on and off for 3 months !! But I remember feeling it years ago just not as much... We are in a constant mind battle and we just gotta keep fighting it but the fight will get easier when we re wire out thought process ! Thanks for the kind words and I am glad I am helping a little, I received so much help on this site recently and I just want to do the same and return the favour to other :)Take care !
 
You sound exactly like me. I, too, went to the neuro in August, doubted his diagnosis, and marched back to him when I got new symptoms this month. He cared only about the fact that I showed no clinical weakness. If you had Kennedy's or any other neuro muscular disorder, your life would be significantly altered by now. Don't try to diagnose yourself. I went down that path and it made me a wreck -- brought on more symptoms, more fear, etc. I've cycled through every major disorder you can think of. Trust your doctor. And try to stay away from the Internet! God bless!
 
I believe if you feel numbness and were diagnosed with mild carpal tunnel, that what you experienced is related to that. The nerve study said "normal motor", and I'm no carpal tunnel or nerve expert, but those two words together seems like gold on paper to me!! Yes, these symptoms cause mental warfare. Stupid ego in the brain puts up a fight and wants to win and keep driving us crazy! I'm sorry you have mild carpal tunnel, but maybe it's not so mild anymore? Maybe that's why you had this experience. Do you mind if I ask if you have pain or tingling? I am having symptoms in my right hand, constant for a few weeks now. If not better by next week, I am going to go back to my neuro.I have pain that comes and goes in my thenar thumb muscle, sometimes the pain migrates to the base of my middle finger and index finger. What bothers me the most is I have a ....tingling....or is it a couple of tiny tiny twitches I can feel but can't see? I go back and forth with these questions. This tingling is throughout the day, in thenar and in my web muscle, between thumb and index. I do get tingling at the base of my middle finger, mainly at night. I also experience weak periods, with holding things, pushing buttons, etc. I wonder, are these signs of carpal tunnel? I'm not googling anymore! Have you had any of these symptoms? I do work on the comp. all day, for years now, and this is my dominant hand. My left hand/arm is symptom free.
 
I also have twitching for 6 months, dents around the knees, pain in the left arm (sometimes on the shoulder, deltoid, wrist or back of the hand). My left hand seems to be gradually atrophying, but my EMG is normal. I also feel the same: wake up every day in fear that the weakness arises. My wrist also seems stunted and have a dent on the forearm. Now just wait, there is not much to do. Living one day at a time.
 
That feeling of waiting is devastating ... I feel my left hand every day thinner, my deltoid dented, pain ... and so I think the worst because it only occurs on one side of my body.
 
I'm sorry the mental warfare is so intense for you :( I hope it does down for you very soon. Thanks for the advice about carpal tunnel. I don't have shock type sensations, nor pain in the joint, it's def the thenar muscle. I will call for another appt about this since it's not improving. For the mental warfare: do you have any weapons, except pills? Have you tried mediation, progressive muscle relaxation, hypnosis, anything that has helped you win little battles?
 
Hi friendsI call you friends because this website does seem like a little community.Anyway I'm just after some advice, again, as usual I guess.I'm still having a knee problem which has started to cause me trouble climbing stairs, a little knee pain when walking up the stairs but much more after the stairs when I'm on a level surface and I try to lift my leg as I take my next forward step if you know what I mean. So now I avoid stairs, and the squats I was doing I don't anymore because it seems to bring on the knee pain. The knee would buckle if I let it.But today a couple of things have made me go into meltdown. First of all I noticed that when I'm standing and I tense my legs bringing the knees slightly forward as if I'm going to squat I see my thigh muscles (just above the knees on the inner sides, both legs) quiver like crazy. It's not a twitch I guess, it's a continuous quiver clearly seen under the skin which looks like all over the muscle. Is this normal when thigh muscles are tensed?And secondly I've been having constant sensations in my left hand, hard to describe but I guess it's some sort of fast twitching or whatever inside the palm which has been happening for probably a couple of months now. But today just above my left elbow I've been getting pain sort of like a cramp, more pain than cramp but cramp is the only way I know to describe it. I've lost weight in that same area of my arm, actually I've lost weight everywhere but where I think there should be muscle all I can feel is soft squishy tissue. The pain sensation is most uncomfortable and of course I'm panicking that this is the ALS cramp type of issue that happens. I can't keep running back to the doctor all the time, and trying to get neuro appointments is hard because the wait is about 6 weeks, I just don't know how to cope not knowing that I definitely don't have something nasty. I guess the weight loss has also caused veins to become very prominent and of course I'm scared that this is muscle loss.I just want to point out that I'm not reading ALS sites at all, I didn't look at many of those right from the start of all this once I knew what ALS was, so I'm just trying to say that I'm not imagining this. I agree that my anxiety isn't good right now but if it wasn't for these changes that seem to be going on in my body I'd cope better. I just can't cope and feel like a loser having to come here all the time when clearly there's so many others here for similar reasons, I guess I feel selfish really, trying to get support from others who may be going through the same that I am but I don't know what to do, I just don't know if everything that is happening to me is benign or not.Wow what a mess I am hey !! Hmmm my arm doesn't feel good at all, some sort of pain or cramp, I don't know what. I also feel left arm weakness but I don't know if this is perceived or not.Any opinions most welcome.Thanks.Edit: And not 5 minutes after I posted this I got lots of twitches in the area where the pain is in my left arm. What's going on, it's gotta be the nasty :( I often wonder if I got BFS and something nasty.
 
Hi againJust wondering if anyone has any thoughts on my above post. I guess some good news is that for now the cramp type of pain in my arm has gone. I'm wondering about the quivering thigh muscle which I really only see when the light is right, it looks like lots of ants in my thighs when the thigh muscles are tensedI'm still having a knee problem during and especially after climbing stairs and that's got me somewhat concerned. Today behind my right knee as I started to walk I got some cramp type pain for a few steps as I got out of my chair to walk. I really feel so fatigued and worn out from all this.It kind of amazes me how BFS can be benign when it seems to cause so many varied painful and annoying symptoms.Cheers
 
I honestly don't see anything different in what's going on with you than what's going on with the test of us... For instance my leg that's got the bad sciatica type pain started to get crampy pains tonight but didn't actually cramp ...bit I'm putting it down to a sore leg in general as the sciatica pain is bad and I may be using my leg a little different to avoid the pain..Who knows? I think the key is don't question everything you feel going on in your body as that makes you hyper aware of everything and you will get stick in a tail spin of anxiety and worry ! My thump gets the crampy feeling too from using my smart phone too much browsing web and other stuff !
 
Thanks for your replies. I just can't believe this. All of a sudden I've realized that I am having trouble lifting my left arm, the arm feels so heavy. Great just great, something else to panic about.I so hope that I'll be able to read these posts back in a year from now and see that there was nothing serious. Just when I'm starting to feel calmer something else happens. This weak heavy arm feeling is causing great stress. Could my symptoms change so much if there was ALS going on?
 
Ok, so here's the thing. I sincerely apologize for my previous panic mode posts. Not thinking straight and a mighty good dose of anxiety has made me panic, and I can see that, when I read my previous few posts back it's just not me, I'm not feeling too proud with the way I've reacted on here, rather embarrassed actually.I certainly do have symptoms of something going on, probably anxiety is at the top of the list, I'm sure my doctor would agree. I do have other issues going on that I haven't written about here, if I wrote every symptom I've got I'd come across as a major hypochondriac, well I'm probably that anyway but I need to calm down a bit.Anyway I'm sorry folks and I do appreciate the responses to my posts. The feelings I have got going on in my body are just so confusing and stressful for me that I don't know what to think anymore. The one thing that is keeping me from completely losing it is the fact that I had an EMG back in early August and at the time it didn't show any MND, I guess if it didn't show it back then, then it wouldn't now. The EMG was on both legs, arms, hands, and my tongue, pretty comprehensive I'd say. I want to 100% believe my doctors but like others here I have doubts, which is a shame really because the doctors are good people too and all they want to do is help.I'm sure I'll post some more here but I'll try to tone things down a bit. You guys are all great and I guess we're all in this together.Merry Christmas and thank you so much.Oh by the way, the weak arm I had a few hours ago, it now feels normal again. Three cheers for anxiety - NOT.
 
I am committing to putting as much time into conquering this anxiety as I do worry about my symptoms. The worry will not change anything. I am going to try to contain my worry to 10 minutes per day. No worrying allowed except for 10 minutes at the start of the day. Knowing I can obsess at some point might help. I have also heard of worry Wednesdays. If my first plan works, I will see how I do if I allow myself to worry all I want all day long on Wednesdays. If a worry comes, write it down and look at it at the designated time. I have heard this can be a successful tactic.
 

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