ALS/MND Symptoms: Steve's Update

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mommyLDN

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steve, you've been to a neuro. Sounds like you've seen him at least a couple times, and that he specializes in ALS/MND. He said you're fine, right? You're fine. It really is that simple. Also, I should say that I've had all the symptoms that you list.My doctor called my obsessing on symptoms being "hyperaware" of my body. Really explains it well I thought.
 
I am so relieved for you, and I'm sure everyone else feel the same way. Some of us have been here for years, and have heard many stories very similar to yours. Yes, the dizzy off balance thing can be BFS. And any feelings of tightening muscles or weirdness can fall under the category of parethesia, also a symptom of BFS. In layman's terms, this seems to all be related to nerve hyperexcitability. I had a friend in the medical field who got BFS after lyme disease, and spent over a year seeing doc after doc because she couldn't accept that something that caused so much weirdness could be benign. My advice is to use the search function here whenever you have a question. Or you can post, and most likely you'll hear "been there, done that" over and over. And with time it will hopefully go away, or you'll get used to it and ignore it. My last break from this board was over 7 months. Just back now because i wanted to see how everyone was!
 
Robynn,Congratulations! First off, my advice to you is to bookmark this post so you can always remember what you wrote here. Remember how you were told you definitely do NOT have the big bad scary thing. And remember how relieved that made you feel. Remember how happy you are to be one of us. This is something you should never ever ever ever forget. :D) In regards to your other question, yes having wonky/wobbly legs is completely par for the course in BFS. It used to happen to me all the time. In fact if I used to concentrate on it, I could actually make my legs all wobbly. All you have to do is completely focus on something that scares you, or focus on something that stresses you out, and watch how easy it is to intensify your symptoms. Once I realized how easy it was to do this, once I realized I actually had a fair amount of control in what was happening to my body, it went a long way in getting me back on the road to recovery. Because, for most of us, I believe control deep down is all we are looking for.Your muscles are going to feel weird for a while, but remember, most of that is being caused by anxiety, and anxiety isn't going to hurt you. You just have to find a way to wrap your mind around controlling the anxiety, and around controlling your symptoms. For some people medication helps the most, other people have been able to control this without medication. But every person is different.Did your doctor have any recommendations for what you should do next?Again, welcome to the club! :D) P.S. If you want to read my history, just go back in my posts and read the stuff I was writing two to two and a half years ago. My twitches actually started on my face and on the side of my nose. Since then I've practically twitched everywhere. I have to say though that the throat and the chest ones have always been the most bothersome. Nothing messes with your digestion quite like a twitching esophagus. :LOL: It always gets better though.P.P.S. Oh yeah and now that you're a BFSer it's time for you to learn the BFS credo. Ready for this? "Changing symptoms doesn't necessarily mean worsening symptoms." Learn that and live it, and you will do very well with BFS.
 
Congrats! I know what it's like to be freaking out and then get the clean bill of health from a neurologist. Please keep two things in mind:1. He's done far more research on neurological disorders than you2. He's seen far more people with neurological disorders than you could ever hope to seeDon't second guess him. Don't play the "I forgot to tell him this" game or the "He sure seemed distracted I bet he messed up the test" game.Work on your anxiety - even outside the symptoms you're feeling. It is very, very, very obvious to any outside observer that you are freaking out. In fact, you're probably freaking out more than 90% of the people I've seem come to this board. There's nothing wrong with that, in fact it makes it extremely likely that anxiety is your only problem and honestly, that's the best possible diagnosis.
 
Excellent! I am very very very pleased to hear the neuro say they were 100% certain you did not have A word. Your symptoms however, do sound quite debilitating, and I hope that the neuro had some sort of answer for you (though it never seems they do). I'll be in touch, for now I hope that you and your family are celebrating.
 
Thank you everyone for being here to congratulate me on not having the big A, and believe me I do feel some significant relief in knowing that, but to be honest that really never was my fear because I already new that if I had been twitching for this long, I would have had some kind of clinical weakness somewhere, but my fear was the much more rare PLS. And it is going to take me a while to get over that fear, all he would say about that is "ya that may be what you have starting, but you dont quite fit the pattern, HMMM, ok, so now what doc?? All he said is go live your life and if you wake up and cant move something come see me, LOL. I need some more reassurance than that really. He did say that what symptoms I do have would probly not be there so much if I could get my anxiety under control. I just want to hear I dont have it, but he said there is no test to rule it in or out, and that it is soooooooooo rare, and just told me to stop stressing over it. Ok, I'll try. :oops:
 
As for feeling unbalanced, I have felt that way for at least four years. Walking on the sidewalk, it feels like the sidewalk is slanted and I'm going to fall off. Waiting in line for anything, I almost have to hold on to a wall or I feel like I'm weaving. I don't know what clonus is but I do have the big jerks when falling asleep. I have a host of other symptoms which I just live with. I have had a positive lyme test but I'm not getting any treatment.Sandra
 
I'm about to jump off of here for the night, but I would be curious to know why you arent getting treatment for Lyme Slowskid?? And the your description of being unbalanced is exactley what I am dealing with to a T. Leave me a message about the Lyme thing.
 
Congratulations. Now try to focus on something else, a new hobby or sport, anything to take your attention away from self examination. Forgot to say my neuro also said it was practically impossible to self diagnose a MND condition, but due to the power of the internet wrong self diagnosis is on the increase. A LITTLE AMOUNT OF KNOWLEDGE COULD BE DANGEROUS, I think is how he put it.Take careDav.
 
Hi 'Mommy'. Got you email, thanks. And have read all your posts. Looks like the neuro visit was all good so that is fantastic. And it also looks like you are getting a bunch of replies from people a hell of a lot more knowledgable about BFS than I am. So you came to the right place. BFS seems to express itself, to some degree, differently on each of us. Some general trends, but then some not so general. I would not think that just because you think you are displaying something different to others, that does not mean you have a 'nasty'. As others have said, time is really the healer. In the sense that the longer you have BFS like symptoms, the more likely it is to be BFS. And also,the longer you have this 'thing' the more you come to grips with it, and hopefully move from panic to acceptance mode. That helps reduce the anxiety, which in turn hopefully helps reduce the symptoms. In answer to your query. I get dizzy light headed moments, which makes me feel unbalanced, but that is about all. The mind can play strange tricks, and if you convince your self you have any symptom, and focus on it, you surely will have that symptom! I must say we all have our up and down days, I guess that is what BFS is all about..and why we come to this board- to be helped and to help otherscheers & take careRodger
 
YES, Aussie sufferer, it was 'comforting' to me that you were able to describe that 'off balance'.....disequilibrium thing so well-!THIS is just started happening to me in last 2 weeks! (Tho i've had benign positional vertigo--from an inner ear problem for close to 30 years! I KNOW what that is.....from the ear--I lie down & take a 25 mg Antivert....& it goes away...in a few hours) THIS.....'equilibrium thing'...is different---as Robynn so well desribed it, like walking in a small boat....in the water! :eek: Every once in awhile.....my head feels like....for a split second...I'm gonna fall over!To be able to know...that this is part of BFS....is, indeed, comforting, Aussie sufferer, tho I do empathize w your discomfort!Sometimes....it feels like my brain is..."off center"-! :rolleyes: Good to hear that dear Robynn,.......does NOT have "that disease"--(tho I had reassured her she did not)---but, I know her other symptoms are quite distressing & scary to her---especially the clonus! Hope you're feelin better today, Robynn---just relax---& my "stress therapist"...taught me some breathing excercises---!I can't wait to see her again...she has been such a help in only 4 sessions...(biofeedback, breathing excercises)--Tho, I keep her in my prayers....the poor woman was in a car accident last week....& came out of it w a broken Tibia (foot)---!Anyway---it's all good---as I wait...with great anticipation to going to Mayo Clinic...in Minnesota...June 6---!I'll keep all you guys posted! Stay well....take a deep breath in...hold it to a count of FOUR...& exhale....to a count of eight...emptying all the air out of your diaphragm! Do this 10 times---it 'quiets down'..the parasympathetic nervous system-! :)
 
Hi I don't really want to talk about lyme because this is a community but here is why I am not getting treatment. I am in Canada and lyme is a political issue here. There are 30,000 diagnosed cases in the States every year and a mere handful in Canada. The test here is very flawed and hardly anyone ever turns up positive and doctors won't recognize the US tests so they just say the US testing is flawed and they won't treat. Meanwhile, all those symptoms, well that's just stress, they say. So, either the US has thousands of false positives or Canada has thousands of false negatives. Meanwhile, I am just waiting for them to sort it all out, hopefully before I kick off, because even the people who go stateside to get treatment, they spend piles of money and they don't ever seem to be cured.Sandra
 
Slowskid, I wasnt trying to get you to talk about Lyme on here, thats why I said send me a private message about why you were not being treated, I was not aware of the issues with Canada and Lyme. But thank you for responding to my post.
 
That's okay, mommyLDN. When I first joined this forum, I was afraid of ***. In fact, I had eight out of ten early signs of *** from one of the other web sites. As far as I'm concerned, if I do have lyme, it's pretty benign compared to the alternative. I have had widespread twitching for two and a half years now and I'm still functioning so I don't worry too much about it. Most of my symptoms are bothersome but don't stop me doing anything. There's the unbalanced feeling, ringing in the ears, sensitivity to light, swallowing trouble, numbness in arms and legs and/or pins and needles. Creepy crawly feelings, muscle aches and pains. No wonder all the doctors think I'm a hypochondriac. Maybe this is just middle age stuff or hormones acting up.Sandra
 
Ya I've given that some serious thought, the whole hormone thing, and I'm quite confident I'm all out of whack in that department also, LOL. I wish the twitches where all I had that was scareing me, all this brisk reflex crap is really screwing up my head BIG TIME!!
 

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