Managing Symptoms of BFS

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Spaghetti69

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Hi All, I have had typical BFS for several years now and have managed my symptoms through a mixture of Cognitive Therapy and NLP. Recently it has reared its ugly head again probably due to stress off having a baby and maybe a virus that I had over xmas. My new symptoms of calf pain and shoulder pain got me thinking about Parkinsons and after a few internet sessions of reading horror stories about how it presented itself got me thinking "oh no thats what Ive got" Basically a few people particularly young onset victims start with cramping in the feet and muscle pain. I know they also have other symptoms as well but as you know health anixety is not really logical! Anyone has any similar experiences?
 
Yes, I worry about it. Especially since my symptoms started with a toe moving on its own. But, after seeing 5 neurologists including one at the Cleveland Clinic, I'm sure someone would have picked up on that by now. I understand your fear. I've experienced it myself.
 
I have nerver worried about Parkinsons because the symptoms just don't fit. It's weird though when I was in my scary days of BFS I pretty much told myself I could handle anything but ALS. I remember thinking cancer would be a paid vacation compared to that. I know, it sounds sick but that is how terrified I was. I highly doubt you have Parkinson.
 
Yes I understand that the symptoms do not fit but if I am being honest nor does ALS and everyone hear seems to be paranoid about that. People with ALS normally first notice weakness and go to the doctors because they can't walk property blissfully unaware that they have a fatal illness. With Parkinsons and MS the symptoms are much more vague and BFS like (cramping, muscle pain, spasms, sensory issues) Only my opinion but the truth is that 99% of the people on here including me probably suffer from severe health aniexty.
 
Yes I have Exactly the same thing and it was after having a baby. Did your twitching ect start after you delivered? And I would take Parkinsons over ALS anyday!
 
WellsFive,My neurologist said he TYPICALLY sees our symptoms after a woman delivers a baby. His theory is the immune system sees the baby as an invader and that sets this off. It wasn't true for me, as I had my last child 4 years before all this beep started. Still, I thought you might find his insights useful in your case.P.S. He told me it almost always goes away in a case like yours.
 
YOU are so not Pathetic!!! Its real stuff we are having and its so annoying and scary. Kinda like people who have headaches for 10 day's straight don't you think they would freak out, yes its real stuff. so no you are so normal to think these thoughts. :)
 
Thanks! And maybe that is one big difference too - that when I had my fears of cancer, there were no real persistent symptoms that backed up my fear and time would pass and my symptoms (real or not) just faded away. With this, seeing and feeling the twitches is a CONSTANT reminder that something is going on. And all the weird sensations keep you wondering if maybe it's progressing into something else. I figured by 3 months in, I'd be reassured that it was nothing to worry about. Guess the jokes on me. Now my objective is to just find peace w/ no matter what this is, benign or not. For me, the only thing I've found to give me peace is reading the Bible.
 
Yep you are so right, constant twitching makes you think could it be turning into something. Well I have been twitching for two years and feal like its my first day of twitching. Everyday is a new day and Its on my mind 24/7!!! When I walk, eat, talk, on and on when is the insanity going to stop. I have no fear of cancer as most cancer is curable! ONLY ALS! Not even MS, thats workable. I know many people with MS and its not that big of a deal. I know 1 person that died of ALS and from what I know the Dr's told him he had ALS pretty soon after testing him and he was in denial and thought he had Limes diesease. After about 6-9 months he was gone. So from what I have heard Trust the Neurologist. But then again I'm typing this and I have a hard time believing myself. Soon we will all be over this, pray pray pray! take care
 
I agree. We have to trust the docs and there is never enough prayer! The second neuro I went to said there would be other symptoms by now and he was 99% sure it was bfs. And of course, all I think is why not 100%? Did he see something? I know that he didnt but my mind always goes right to that negative thought process. I'm going back to m first neuro in 2 weeks and I'm bringing my wife w/ me so she can listen objectively to what the doc says. I always just hear the worst and take things out of context. Funny b/c I always got mad at my mom for doing the same thing. Now the shoe is on the other foot! Of course the apple doesn't fall far from the tree.
 
I brought my husband with me the 2nd time I went also. I wanted him to listen so I can grasb everything and have my husband tell me over and over I'm fine. My husband actually say's Ashley remeber Dr. Ash would send you to a ALS specialist if he even thought in the slightest you could have ALS. This is a liability issue were talking about. I try to say by now I would have weakness I wouldn't even be able to walk but in my twisted mind I can grasp it. Your right though about coming to terms either way with god ect and being in peace. I was told be someone who had Twitching for 10 years finally just trusting in god. I dont know how to do this, I just can't seem to get the right frame of mind. I have 2 little girls at home and I can't even think of not being here for them. Sick
 
Also you said a 2nd neuro? I wasn't able to see a 2nd opinion in Oregon you have to have a refferal and my primary wouldn't give me a second opionion. HELLO that should be my answer but no I can't get it through my thick head! UGG! How long have you been twitching, what are your primary spots, any other symptoms?
 
34 yr old male. Just a few days shy of the 3 mo mark. First had some pain down legs that I noticed after a road trip and almost immediately noticed bilateral twitching primarily in the calves and feet (non stop). I also get twitching spots that come and go throughout my body (arms chest neck thighs face). I even had a nonstop twitch on my face that lasted for exactly one week and then went away. I also get pain, especially a day or two after exercise, in the tops of my feet, arches of feet and calves. Recently I've felt frequent pins needles in my left foot and it gets cold easily. Also I get infrequent periods of foot cramping, though my feet often feel like they're on the verge of cramping. But with how my toes twitch back and forth it is no surprise. I've had numerous panic attacks in past several months from my hypochondria. I've also noticed tremoring in my arms and hands (only essential tremors). I've done more calf raises in the past 3 months than the last 30 years. How about you?
 
Yep I'm a spitting image of you!! I have done more hoping and jump roping that ever before. I even walk on my heals to test that. Spread my fingers apart and have my husband squeeze them together and see if I'm strong. Its SICK! I haven't had cramping but I get acheing. TwitchinG EVERYWHERE, even behind my ear, in my sinusis, you name I have had it. I just don't like the shoulder ones they make me freak out. I twitch constant in my calves. I have been twitching for 2 years in June. we I have heard if after twitching for 3 months no weakness equalls no ALS. Its funny I'm telling you this but I can't seem to understand it myself. I have heard many things can cause twitching. I'm young too only 28!
 
Crazy. I also have my wife test my feet and toes for strength (all the time)! And she checks my calf size almost every day. Yes, I would say 2 yrs in and you're safe. My first neuro said ALS doesn't come on this strong or in that manner (but exceptions are what scare me). I do notice anxiety and caffeine make twitches stronger. They never go away but certain things aggregate it. Did u have an EMG? I did 3 weeks in and it was clean. Blood work was all normal. But for whatever reason that wasnt enough to ease my mind. Let me guess? You've got an awesome spouse and child/children and all you think about is what if they have to watch you go through this? I've got 4 kids to go along with my amazing wife and I think that adds to the anxiety. Fortunately my wife is very understanding and supports me through my panic attacks. But prob deep down she thinks I belong in an institution! Weird thing is I seem to go in spurts thinking I either do or dont have something serious. Just hard to imagine having this the rest of my life.
 
Its so funny to read those posts from members in their early state of BFS. Its like reading my own minds two-three years ago. Relax, man. PD aint this way and ALS is completely different.
 
In all seriousness, it's good to hear that you find these posts funny. It's encouraging that you once felt this way, but can now look back at it all differently. I look forward to the day I start relaxing about this (which hopefully won't be too far off). Despite all my fears, there is a rational side of me that knows (or should know) better.
 
I have the exact sme thoughts! I have two little girls and amazing husband and is all I can think is what if I wasn't here for them. I'm so tired of testing myself everyday and waiting for a new spot to twitch! I just want to enjoy my babies new house, husband ect life in general! My toes even move from a twitch in my foot what the heck is that. Not sue if I told you but I'm a twin and she went through this same this twoYears ago.Ps my husband is beyond tired of the word twitch so I can't say he is super supportive but he is always there for me.Sorry typing from my I phone its hard to type
 
I thought I had parkinsonsd about 6 months ago. My left arm would shake upon waking..and I mean shake! ( as opposed to tremors- which I get as well). I posted about it a few times. The chiro' did not rule it out either. 6 months on it has not go any worse, so I am 'happy' enough to convince my self to think....probably not PD. Not much I can do if it is anyway! No point worrying about it.....just makes all my other anxiety related ( including BFS) ailments ramp up..and that is worse! cheersRodger
 

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