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AboutBFS.com • View topic - Where/how r our HEROES/SENIOUR members??

Where/how r our HEROES/SENIOUR members??

BFS Online Support Group

Moderators: JohnV, Arron, garym

Re: Where/how r our HEROES/SENIOUR members??

Postby SecretAgentMan on February 4th, 2016, 7:30 pm

If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Where/how r our HEROES/SENIOUR members??

Postby seanrblock on February 10th, 2016, 5:42 am

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 =).
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Re: Where/how r our HEROES/SENIOUR members??

Postby edado69 on February 16th, 2016, 5:52 pm

Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
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Re: Where/how r our HEROES/SENIOUR members??

Postby May on May 11th, 2016, 6:56 am

10 years here as well
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Re: Where/how r our HEROES/SENIOUR members??

Postby matt21 on May 12th, 2016, 7:54 am

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!
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Re: Where/how r our HEROES/SENIOUR members??

Postby wjjw on May 12th, 2016, 11:23 am

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
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Re: Where/how r our HEROES/SENIOUR members??

Postby garym on May 13th, 2016, 8:23 am

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Re: Where/how r our HEROES/SENIOUR members??

Postby raindog on August 12th, 2016, 10:53 am

: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 root

Angiograph 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 below

http://i35.servimg.com/u/f35/17/63/76/05/drhare20.jpg
http://i35.servimg.com/u/f35/17/63/76/05/drhare11.jpg
http://i35.servimg.com/u/f35/17/63/76/05/drhare10.jpg
http://i35.servimg.com/u/f35/17/63/76/05/drhare12.jpg
http://i35.servimg.com/u/f35/17/63/76/05/drhare10.jpg
http://i35.servimg.com/u/f35/17/63/76/05/drhare13.jpg
http://i35.servimg.com/u/f35/17/63/76/05/drhare16.jpg
http://i35.servimg.com/u/f35/17/63/76/05/drhare17.jpg
http://i35.servimg.com/u/f35/17/63/76/05/drhare14.jpg
http://i35.servimg.com/u/f35/17/63/76/05/drhare15.jpg
http://i35.servimg.com/u/f35/17/63/76/05/drhare18.jpg
http://i35.servimg.com/u/f35/17/63/76/05/drhare19.jpg

My 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. :roll:

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.
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Re: Where/how r our HEROES/SENIOUR members??

Postby Yuliasir on August 15th, 2016, 3:17 pm

oh raindog,
so sorry for your overall condition

yep connective tissue disorders often result in aneurism and valve regurgitation, this is really typical for one of EDS types...
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Re: Where/how r our HEROES/SENIOUR members??

Postby garym on August 15th, 2016, 3:18 pm

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Re: Where/how r our HEROES/SENIOUR members??

Postby paulzeee on August 31st, 2016, 1:08 am

9 years now since I signed up here. Still twitching. Still strong, and I carry on. All the best to the newcomers.
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Re: Where/how r our HEROES/SENIOUR members??

Postby johnnythejet on September 1st, 2016, 9:54 pm

Great to hear from all you old timers. Raindog, stay strong, brotha!
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Re: Where/how r our HEROES/SENIOUR members??

Postby emmie.s on September 3rd, 2016, 6:53 am

It's early Saturday morning, and I should be sleeping in, but my left butt cheek woke me up with a huge, nonstop twitch. Great, just what I need: a hotspot on my ass. The big ones are annoying because you can't ignore them. Also, popcorn twitches everywhere.
This has been going on for about 9 years. So I think that makes me a senior member! Some days worse than others. I've been through it all: tongue twitches, eardrum twitches, ratcheting muscles, cramps. I still make the mistake of freaking out and googling symptoms because I'm hard headed. For the females: it's a week before my cycle, and like clockwork I can tell because the twitches get noticeably worse.
At any rate, I'm up already so I might as well go to this early morning spin class, which I've been obsessed with. I go 4x a week. I'm hotter and stronger than ever, twitches be dammed!
Have a great day y'all.
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Re: Where/how r our HEROES/SENIOUR members??

Postby Rolon on March 10th, 2017, 4:15 pm

I just passed my 13th year anniversary and i am now paying a visit to the website that practically saved my life.

Like many of us on this site, i was in a very low and dark place. I had it all. Long story short, I even planned out my funeral.

Then I found this site and found hope! Things slowly got better, thanks to all of those that were here back in 2004.

Today, I am almost totally free of symptoms. Sure, i'll get occasion twitch here and there, but I actually think i now know how to make them stop (sometimes). My worst twitches only last two or three days and those occurrences are few and far between.

Take care all!
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Re: Where/how r our HEROES/SENIOUR members??

Postby paulzeee on August 14th, 2017, 9:28 pm

Still here, still strong, still alive, 10 year BFS twitcher.
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Re: Where/how r our HEROES/SENIOUR members??

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