Seeking Reassurances From Seniors

Highlights Only
HiJust popped in the other day and posted on a couple of topics. But without a few oldies aroundI guess its hard for newbies to be reassurred, so I will try and post more often.In my case its just a matter of getting on with life, living with the symptoms but not lettingthem overtake my mind the way Iused to. I guess that makes you drift away from the board which everyone will do eventually! :D) cheerssharon
 
Cogrates Bill!Thanks 4 updating.R u really twitch free?pl describe ur present symptms,if any and how u combat with bfs during initial period?thanks in adv.Baily.
 
that' sso good to hear j_sageurge. Gives me more hope! I am 10 months into this. I ended up pregnant around 3 months into this and noticed a huge drop off in symptoms suddenly from 2000+ a day all over to several hundred a day to now the last few days I have had 50-100 or less a day, some days even less than that. I think the pregnancy for me might have helped, but it also helped me to take control of my anxiety and that has also helped. I am hoping after the baby is born it doesn't come back full blown and am hoping and praying that someday i can say I am twitch free(as much as a normal person). Thanks Bailey for having the oldtimers post. It really is reassuring!Tanya
 
How is everybody?Happy new yr 16 to all .I am fine in good health.No ALS STILL.But twitching is on..How r my seniors like mariomangler,aussiesufferers,ghayes, twitchydoc n robynn n others.Waiting for their updates n replies.
 
I'm still here. I just don't post very often because I've sort of moved on from thinking about this stuff. We have BFS, BFS is boring, after a certain point you just sort of have to get back to the real world. We can't just sit around and feel bad about ourselves forever, we've got stuff to do.What I did is I wrote a book: :D)
 
Although if there is one thing I can say that will probably help people, it is that peoples' bfs symptoms ALWAYS get worse when the weather is cold. And they ALWAYS get worse during cold and flu season. This board is ALWAYS filled up with people freaking out between December and January because that's just how it works, and how it has always worked. Go back 10 years in the archives, you will see that December and January are always a weird time around here. So any time it feels like your symptoms "suddenly got worse" or "they suddenly flared up", just keep a journal and realize it happens every time to you at this point in the year. People tend to forget that because BFS people are always caught up in the present so badly. You need to keep the big picture in your head at all times and recognize the patterns you will go through. BFS really doesn't change that much.
 
Hi guys! Thats awesome you wrote a book Mario. I am still around; though I admit I forgot about this forum for a few months (or rather was too busy to give BFS much thought as all). I am twitching as ever, and not giving it a second thought. My left calf was annoying me last night, but somehow I was tired enough to ignore it and get some sleep. I have been twitching since before Obama's first presidency :) and I suspect I will be twitching and have hyper nerves and sometimes even cramps for many presidencies to come. Take care guys!
 
I hadn't been on forever until the last few days and if anyone read I'm as twitchy as ever over the last 44 years . Having a terrible hotspot flare in my left hand going on 2 weeks tomorrow but that's my normal . I don't post much but am around sometimes if I am just twitching so bad I can't stand it or supporting anyone that needs it .
 
Happy new year all! Its been years since Ive been back here. I started twitching, 2007 from memory and was in a terrible state at the time. Long story wont bore you with it but mum had ALS and all sorts of fears about my twitching consumed me. Once I hit rock bottom I started working on my anxiety and happy to report that after a period of two years my anxiety disappeared and the twitching just became a non issue. Most of the time I don't twitch but sometimes I get a flare up but I just ignore it, really not much at all. No big deal, Im healthy in body and mind and I think the key here is to work on your thoughts. My best piece of advice is to not analyse and think too much about twitching, leave them as an after thought. Be dismissive of them and they will just end up in the background of your mind. Just embrace your life and make me the most of it. Don't let dumb twitches control you. You are in charge of your thoughts so make your thoughts matter. Don't dwell on fearful thoughts and you will find the twitching will just be a non issue. I regained my happiness and I will never look back :D)
 
Thanx meriaj for update n also for giving an excellent peice of advice.Sorry to hear about ur mom.How is she now?Any other senior/veteran for giving updates??
 
I am still symptom free of BFS after all these years. I still attribute to my experience with BFS to gut issues. Once I addressed my diet and treated for Leaky Gut Syndrome I responded very well and began recovering. It took many months to fully heal but I have been doing great. I still stop in from time to time to chime in and see how folks are doing. Life is good. :)
 
nice update secretagentman.How do u corelate gut with bfs.?What dietary changes u made n what is leaky gut?Pl.elaborate.I too have gut issues like milk n wheat intolerance.I stopped such foods but still have bfs.
 
Hello friends-I have had BFS since 2005 or so. I'm at 10+ years so I think I am a senior member for sure. I agree that many members moved of from this site, I come back and read my old posts from time to time. I still twitch basically every second of every day. I have good weeks and bad weeks when it comes to intensity of them. Most of my cramping and tremoring have stopped, they were extremely bad for years. I have seen many neuros and had lots of EMGs (some results I posted here). I am doing well, occasionally I will get concerned if an area hangs out for a long time (but then I remember that its happened to me over and over again). Hope everyone is doing well =).
 
Hi, I've been following this forum for quite some time. My symptoms started in 2009 and I was initially told that i had CFS. I didn't notice any twitching then, just heavy legs upon waking up in the morning and then fatigue that would not go away. With time my symptoms kept getting a bit worse: more fatigue, stiff/spastic muscles, cramps, tremors when flexing muscles and then twitches. It 's now been 7 years! Over that time I had some intense anxiety issues and that definitely made the twitching worse. Today, my muscles are very stiff and i have a lot of back pain. I twitch everyday and anxiety makes everything a lot worse. One thing i noticed is exercise intolerance, where I get tired fairly easily. Last week i spent 3 days standing up at a conference and was getting some pretty intense cramps at the end of the day, that made me very anxious and cause a major flare up of twitches and worrying. That being said, I can still play an hour of Volley Ball, I can go for a 30 min run, work around the house all day, do 50 push ups, etc... I do shake immensely doing any physical exercise but I am learning how to accept that. I was never diagnosed with any clinical weakness, have always been a bit of a hypochondriac and have had 3 clean EMG's, normal reflexes and seen about 4 neuros...All confirmed i am fine. I got to this forum because a neuromuscular expert told me about bfs and i decided to get more informed about it. I was also given a chronic lyme disease diagnosis and fibro. Having seen so many people post with different symptoms, including the stiffness and exercise intolerance, I found relief in knowing that others have some similarities with what i have going on and have found ways to cope with it. Am I still freaked out by ALS? Yes i am, but it is a lot more manageable than before. Some of the advice i read here is really priceless and it has helped me regain control of my anxiety and fears. Hope everyone is doing well!
 
I came down with this crap 11 years ago, out of the blue. Went from a finger twitch, to my eyelid, to full-body twitching in weeks. Lasted MANY years, and included cramping, particularly a weird abdominal cramps that lasted way after the twitching subsided. Also if I'd do something that I hadn't done in a while like using a hammer, my forearm would cramp. After I found this site, and identified with the symptoms in "BFS in a Nutshell" I was convinced it was BFS and not the condition everyone fears. I used to walk a lot for exercise, and at times felt like my calves would cramp, but found that if I took it easy, and worked through it, everything was fine. I know some people have an issue with exercise intolerance, but I suggest you do what you can do and keep trying to increase what you can do physically.I was never a big weight lifter, and thought I'd never do so again after this crap. But last year my son convinced me to do so, and I've been going to the gym with him ever since. I was 43 when this started, and I'm 54 now and in much better shape. I had some shoulder issues (age related), and even those have gotten better. So if you're worried that you're getting weaker, I propose that you can prove to yourself that's not the case. Start excercising, including weights. Take your time and gradually increase. I've given up on trying to tell people how to mentally improve, as it is way too complex. Get your ass to the gym and get stronger. It will prove to you beyond any doubt that you're not getting weaker. :)Cheers,Bill
 
:D)Ive got to smile otherwise i'd cry. A suspected cardiac arrest almost 18 months ago is slowly putting some important pieces of the jigsaw puzzle together. Turned out it was a NSTEMI (NSTEMI) is a shorthand medical term for non-ST segment elevation myocardial infarction. It is one type of myocardial infarction also called heart attack. It may be defined as a development of heart muscle necrosis (a form of cell death) without the ECG (electrocardiography) change of ST-segment elevation, resulting from an acute interruption of blood supply to a part of the heart and can be demonstrated by an elevation of cardiac markers (CK-MB or troponin) in the blood) What also came to light that my Aortic Stenosis which was picked up 10 months prior had also deteriorated and an Ascending Thoracic aneurysm had appeared above the heart just before the rootAngiograph was performed but revealed no problems were seen in respect to coronary heart disiese as my arteries were clear of cholesterol so i was referred for the opinion of a Respiratory consultant a CT scan of chest revealed bi basal lung disease probably Bronchiectasis due to previous episodes of haemoptysis before the cardiac event, At Christmas time i had to have pneumonia vaccination due to very low antibodies and my inhaler of seritide strength was doubled I was also put on an intense course of Vit D 20,000mg daily for 4 weeks and now take 1000mg sun vit D3 daily due to severe Vit D deficiency.Recent echo cardiogram has shown now moderate / severe Aortic stenosis with significant regurgitation hypertrophic septum , Left ventricle hypertrophy as well as an ascending thoracic aortic aneurysm. My own research tells me that someone my age with this type of problem (aortic valve as well as aneurysm with no coronary artery Atherosclerosis the cause will be either a Gentic connective tissue disease or acquired.A couple of weeks back i went to my GP because of what i thought was dermatitis on my fingers nails and to some degree my hands and a flare up of typical rash that has waxed and wained for probably 8 years or so...see pics belowMy new GP believes this to be Dermatomyositis / Anti-synthentaise syndrome. When coupled together with the lung problems im in some pretty deep mud if this is the case as PNH (ISAACS), Myositis, Anti-synthentaise syndrome, Addisons Disease have proven track records as Paraneoplastic Syndromes. So already multiple autoimmune disease all capable of becoming malignant . A recent Chest infection and weight loss again i am becoming very symptomatic for the cardiac problems to warrant intervention and its easy to see the myositis coupled with the Lung involvement due to Anti-synthentaise syndrome then the prognosis just keeps on falling.So for me I don't expect it to be a particularly happy ending, and to say i'm bitterly disappointed with the 4 Neurologists who have let this fly right over the tops of their heads is an understatement. Once i know for sure the final diagnosis then i'm going to take some legal advice because my care as been a catalogue of errors from start to finish. FWIW In 2011 i had a thread on the Isaacs/neuromyotomia forum were i was talking with a member there about Dermatomyositis who because she had the disease was quite sure it was a myositis rash so much so i had a referral to a dermatologist who basically said she was unsure but gave me some cream to see how i got on with it and instantly discharged me back to my GP. :rolleyes: So i would assume if this has been going on wreaking havoc on my major organs without any form of treatment then i'm up *beep* creek without a paddle.
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top