New Member with 13 months of BFS

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New Member with 13 months of BFS

Postby nicholsan on July 6th, 2012, 12:07 pm

Have lurked the boards for the last year but decided I'd join and share my experience with BFS. I'm a 29 year old male who started experiencing systems in June 2012. My symptoms have included twitches, cramps, muscle pain, muscle knots, and muscle weakness pretty consistently. Also my ring finger and pinky finger on my right side feel very weird. It's hard to explain but when I do things like raise my arms above my head or hold my hands out in front of me I am very aware of those two fingers and they feel active/tremory. Random symptoms I've also experienced at times are ratcheting muscle movements, buzzing, myclonic jerks, and very short (5 seconds maybe) dizziness/spinning sensations. My father passed away from ALS in May 2012 after a 7 year battle so even though I never feared I would get ALS just because he had it the initial symptoms led me to think I had it right away.

First I'll copy and paste a list of my symptoms and the timeline from my BFS onset that I brought to a neurologist a month after my symptoms started:
June 7- small amount of intense twitching in left hamstring
June 8 – right leg felt weird, kind of tingly
June 9 – after flag football game, felt cramping between thumb and forefinger on left hand and whole left arm started to feel weird; bottom of left foot started twitching very frequently, keeping me from sleeping, after tossing and turning for a couple hours I fell asleep but woke up 2 hours later very sweaty, whole left side of body felt very strange, weak (almost flu-like) and tingly
June 10 – whole left side of body continued to have weakness/tingly feelings; went to sleep in the afternoon and woke up feeling ok but same weakness/tingly feelings came back over the course of a couple hours and remained for the entire night
June 11 – 14 – started to feel slightly better but still had weird muscle feeling of weakness in different areas such as right leg, muscles twitched in different areas of my body (most concentrated area was toes on left foot but experienced them in hamstrings, calves, forearms, upper buttocks, eye, chin)
June 15-17 – started experiencing light cramping in palms of hands and feet in addition to the twitches
June 18 – developed large knot in right shoulder blade and right neck, pain radiated down into right forearm (skipping upper arm and biceps) making the muscle feel like it was pulled, massage of the knots caused the forearm pain to disappear almost immediately
June 19-30 – knots in shoulder and neck persisted on and off (treated with massage and heat but still lingered most of the time and were on and off painful/tingly); twitching continued all over body with most consistency in left foot; cramps were on and off in all hands/feet; sleep was very restless, would usually wake up every couple hours; was sleeping on an off 12 hours per day, would wake up slightly sweaty sometimes; muscles in right leg and arm felt tired and heavy sometimes; only abnormal symptom was one day I woke up in the middle of the night with a weak/tingly right ankle, when I woke up again in the morning it had moved a little higher into the calf, started feeling slight pain in the ankle that afternoon but all went away by that evening

I took this list of symptoms to a neurologist in Dallas and he did a clinical strength examination that he said was fine and then offered to do an EMG if I wanted to do it. I'd only had the symptoms for 3-4 weeks at that time which he said was right on the border of when things would show up on the EMG. I went ahead and did the EMG and it was clean. The neurologist set me up with a follow up appointment 3 months later and said to cancel if everything went away. I felt somewhat reassured but it was still hard to think I was ok with all the crazy symptoms. In the days following the appointment the cramping in my hands and feet went away but the twitching, tingling/buzzing, weakness feelings, and muscle pain remained. The symptoms persisted over the next 3 months with good days and bad days (mostly bad but they really made you appreciate the good) so I returned to the neuro and again he did a clinical strength test that checked out fine. He told me not to hesitate to make another appointment in the future if I felt like I needed to but that I had BFS and I would be fine. That was my last doctor's appointment for BFS and I have just lived with the symptoms and tried to go about my life. It's hard to not let the nagging worry that the symptoms could be part of some more heinous disease get to me at times but for the most part I've been fine.

After a year I'd say my most consistent symptoms are shoulder and neck pain on my right side (that sometimes radiates down to my forearm and hand), twitching (although not as frequent as onset they are more powerful thumpers now), a weakness feeling in my right leg that causes me to feel like my steps on that leg are off/awkward/slow at times, and the weird ring/pinky finger thing I mentioned at the top. Stress definitely seems to exacerbate my symptoms whereas fun and relaxation can sometimes temporarily leave me feeling almost 100% (although it's usually shortlived). Somedays I get really down momentarily thinking how I might go through the rest of my life not feeling normal, feeling pain every day but then I realize how much worse it could be and realize I'm luckier than I know. If there is a bright side to BFS it is this, having a scare that you have a disease like ALS, MS, etc. makes you realize how short life can be and how fast your life can change. It can be a car accident, the big C, whatever... you never know what's going to happen and most of the time you can't do anything about it. All you can do is try to be as healthy as possible with diet/exercise/sleep, etc. and enjoy your life one day at a time. Things can always be worse and there are millions of people out there that have it worse than me.

My tip for new, scared BFS sufferers is not to panic. I know I was panicking at first and I think it made my symptoms flare up even worse. Once I had my first neuro appointment and he said that it was BFS my symptoms calmed down a lot (don't get me wrong they were still there but were more like a 6-7 out of 10 instead of a 10). Having a father that had ALS I can say for him that his onset didn't come with muscle twitches, pain, etc., it came with weakness. He first started noticing something was wrong when he tried to pick up a fish hook off the dock with his right hand and couldn't. 2-3 months later he wasn't even able to turn the key in the car ignition with his right arm, he had to reach across and do it with his left. He eventually did have muscle twitches he could notice and soreness/pain in some muscles but this was long after a lot of weakness had set in.

If you have any questions or comments feel free to follow up with me. Glad to be here and hope I can be of help to people in future.

Andrew
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Re: New Member with 13 months of BFS

Postby tastemaker on July 8th, 2012, 11:29 pm

Hi Andrew,

Wow, I'm so sorry to hear about your father :( That's terrible and so sad.

Yes, I'm sure your experience from both the ALS and BFS side of things will be of great aid and relief to those on the board who are new to this. I can say that this was a very inspiring post for me. Thanks so much for sharing your story.

Jason

BTW: I've also experienced many of your common symptoms. I've also had a few of your random symptoms, such as the dizziness/spinning sensation spells, the buzzing, and ratcheting muscle movements. You're the first person I've seen here mention the dizziness/spinning. I thought it was just stress (or the fact that I get water build-up in my ears, which could affect equilibrium), but maybe this is just another one of those strange BFS symptoms?
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Re: New Member with 13 months of BFS

Postby nicholsan on July 9th, 2012, 1:17 am

The dizziness was definitely one of my later symptoms. It was probably about 5-6 months after the onset of symptoms that I first experienced it. It happened on and off for about a month and hasn't happened for over 6 months now. Usually the sensation lasted only about 3-5 seconds but it was very disconcerting. I couldn't think of anything specific that would trigger it as it occurred when I was standing/sitting/in the morning/at night, etc.

I forgot to mention a couple other symptoms in my first post. One is a persistent symptom and that is a cracking/popping neck and upper spine. It started about a month after the onset of symptoms and continues today. Sometimes they are big pops when I turn my neck and sometimes it is a grinding, crackling sound (it kind of sounds like rice krispies being crunched) that feels like it is coming from my upper spine. The intensity and severity differ from day to day. Never know when you're going to have a good day with BFS but you really learn to appreciate them when you do.

The other symptom is occasional increased muscle fatigue. I still try to work out occasionally and most of the time my muscles don't get tired any quicker than I remember before everything started but there are usual a few times a week that I'm doing something like picking weeds in the yard, holding my phone up while reading the internet in bed, etc. that my muscles get tired very quickly and ache until I rest them.

That's all I can think to add for now. Just wanted to make sure I had a comprehensive list of my symptoms because I know it eased my mind to read about people with the same symptoms having BFS and not one of the nasties. Every time a new symptom would crop up I'd immediately google "_______ BFS" and be relieved to find a topic or two on here with several people commenting that they experienced it too. Although it seems like everyone has a different experience with BFS there are definitely many similar cases out there.
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Re: New Member with 13 months of BFS

Postby jerry2 on July 10th, 2012, 7:49 am

Nicholsan, I am realy sorry for your father. Nobody deserve to die from this horrible disease.

Your symptoms are a lot like mine are. I also have dizzines, headaches and nausea for what it is worth. Not every day, but theystarted recently, after 8 months into this.
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Re: New Member with 13 months of BFS

Postby Seepi27 on July 17th, 2012, 4:21 am

Nicholsan, you write:

"I took this list of symptoms to a neurologist in Dallas and he did a clinical strength examination that he said was fine and then offered to do an EMG if I wanted to do it. I'd only had the symptoms for 3-4 weeks at that time which he said was right on the border of when things would show up on the EMG. I went ahead and did the EMG and it was clean."

You say that the neuro told you that 3-4 weeks is 'on the border' of when things would show up on the EMG. But everything I've heard from others would suggest that it's never too early to have an EMG to rule out ALS. What you say is very worrying for me personally, since I had my EMG at only one week into twitching.

Anyone care to comment?
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Re: New Member with 13 months of BFS

Postby chrissi on July 17th, 2012, 4:31 am

3-4 weeks is borderline for things so show up in an EMG after hurting a nerve, disc bulging or anything like that. Those will not show up right away. A disease like ALS will usually show up in an EMG BEFORE you feel anything. I guess his doc knew right away that is was NOT ALS from all the weird symptoms, but did the EMG to look for the things mentioned before which would be much more likely to cause those symptoms. But having this in mind, 3 weeks would indeed be borderline to pick it up via EMG.
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Re: New Member with 13 months of BFS

Postby fox2run on July 25th, 2012, 3:48 am

It sounds like nerve-entrapments. They are very common. Regarding your ring and little-finger its likely due to the ulnar-nerve. Try not to lean on the under-arms and especially not the elbow. (Very important). For computergamers and superusers its VERY, VERY common with entrapments on the left arm, as u use the right arm for the mouse and rest the head on the left arm that again rest on the albow. Do that for a period og time - and TADAAAA: nerve-entrapment. Best advice is to change habit AT ONCE! Oh. And dont google nerve-entrapments. Well, just dont google anything... Listen to the docs. They are almost always right.

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Re: New Member with 13 months of BFS

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