How close am I to the "safe zone"?

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How close am I to the "safe zone"?

Postby mjd83 on May 23rd, 2014, 7:59 am

Hey all, just wanted to check in.

I recently turned 31 (April) and as of yesterday, it has been about 23 days since I looked up ALS on google (because of rubbery knees which have come and gone since), 22 days since I "atleast noticed" the twitching, and experienced a rapid increase, and about 18 days since I started noticing mild cramp like feelings in my calves (sometimes feet) after I wake up in the morning (and sometimes going to bed at night). I have been up and down the whole gamut from convincing myself that I was slurring speech and having trouble swallowing (over that now), to freaking out about the relative weakness of my left hand (I'm right handed), to fretting about how the twitches in my calves are more fine and sometimes not felt (just like the so called *** twitches)! I have experienced twitching in calves, thighs, butt, abdomen, arms, hands, under knees, behind shoulder blade, shoulder, and even very rarely on face and eye. Some are thumpers, others are buzzes, others are just fine little dimples in the muscle.

I had a follow up visit with my GP who once again did clinical strength tests (normal), tested balance (also normal), and said my reflexes were normal in all four limbs. He also ran some blood work, of which he said the results didn't indicate any suspicion of neuro-muscular issues.

Basically, after examining me twice, he is completely unconcerned and hasn't even mentioned a specialist. I'd actually love to be able to say "good enough", and just accept my Dr.'s recommendation without bothering with a neuro...and drawing this out more.

What do you guys think.... if I'm showing no clinical weakness, no change in reflexes, and clean bloodwork at 22 days, should I be reassured? I understand that there is never a guarantee that any of us won't develop *** later, but would you guys say that I'm pretty safe in assuming that the mild cramp like feelings and twitches I've experienced this last month are almost certainly benign?

Thanks, I appreciate any input.
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Re: How close am I to the "safe zone"?

Postby Yuliasir on May 23rd, 2014, 8:16 am

Dear friend,
in fact medical consensus is that if a person present any concern which possibly might be regarded as related to MND, then usually 4-6 months without clinical weakness are pretty well indicative of the fact that this person has no underlaying MND condition.
So you may think oh no another 3 to 5 months of waiting!
Nope. Stop waiting for safe zone right now.
I referred to a neuro after only 4 weeks of twitching here there evrewhere and it was almost 2.5 years ago and I am still alive. So should be you, considering the widespread nature of your twitches and considering normal clinical tests.

Just think about the fact that YOU MAY HAVE HAD THOSE SYMPTOMS FOR YEARS. there is no 23 or 22 days or 18 days since you just notised your 'rubbery knees'. You may had that well before and did not give a second thought to it. So your 6 months of safe zone may already have passed years ago :)
Usually people with disorder like ours really started to notice they are not well after certain trigger which on my experience (2 years on the board, a lot of information collected) is either infection or stress, no matter bad or good one (we have here fellows become sick after maternity, happy marriage, job promotion etc.). Before that constellation of circumstances they may have had twitches, perceived weakness, muscle pains, slurred speech sometimes, biting cheek etc. but never thought is its something deradful. Only weakened mind or really increased intensity of the symptoms promoted them to google...and you know what is the result.

First of all you should be reassured by the fact that about 70 % of general population twitch daily (especially in the legs) and have no idea it is someting bad. Come back to those happy 70 %.
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Re: How close am I to the "safe zone"?

Postby mjd83 on May 23rd, 2014, 9:56 am

Thank you Yulasir, that is very reassuring.

I have seen experts mention anywhere between a couple months to 9 months after first complaining of symptoms. I also understand that this is the typical ultra conservative approach of the medical community that leaves open the chance that you are that rare person who presents with twitching (I think I've seen 7-10% of presentations) to an already rare disease (2/100,000 seems to be one of the few consistent and universal figures I have seen regarding this condition) which is probably already much rarer than that anyway at my age group of just turning 31.

I have also read one paper discussing diagnoses that also suggested that young adults who present with twitching and associated muscle pains/cramps/fatigue with no neurological signs of clinical weakness or abnormal reflexes probably do not even need an EMG, and can rule out ALS based on a clean clinical examination. This same paper also said that a similar presentation amongst the older population should atleast suspect ALS since the onset of BFS is less common and onset of ALS is more common as we age.

My GP said that normal reflexes is a very good sign, and I'm actually trying to use that as my main source of reassurance... that after about a month I would have atleast had abnormal reflexes by this point if this was pathological.

Since you and others on here have had the opportunity to collect some data on many users, I would like to tell you this so you can add my experience to the list of others on how this started. I actually had been experiencing a bout of fatigue (pretty bad at first, getting better every 2 weeks) and exercise intolerance (including "rubbery" knees at Jiu Jitsu training) that had lasted for about 2 months. I was actually more concerned about things like CFS and MS at first due to fatigue, and stumbled on ALS by accident.

You will note that it wasn't until AFTER I had started worrying about ALS that the twitching, mild cramp feelings, and a whole host of other real and perceived symptoms started. I was actually sitting at a table working on the computer when I dropped a strawberry (and recalled the ALS symptom of dropping things). I immediately started to strength test that arm in a panic and noticed a small twitch in that bicep, and than forearm shortly after. At that point I became a basket case... and later that night noticed twitching starting up in my legs. At the height of my anxiety, it was all over, and has since subsided a bit.

So if I come out this and it ends up really being benign, I think I have fairly good anecdotal evidence that if anxiety doesn't directly cause these symptoms, it certainly plays a large role in amplifying them.

Would you say that it is a pretty common experience on this board for the severity of symptoms to be directly correlated with anxiety levels?
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Re: How close am I to the "safe zone"?

Postby Yuliasir on May 23rd, 2014, 10:29 am

surely yes :))) especially on 'fresh' people I think.
there are individual variations however but almost all BFS people report rapid spreading of the twitches, great variety of types, prevailing leg twitches of course, cramps, pains, tingling and other issues joined later, and I personally call it 'crazy circus" becasue show program changes every week.
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Re: How close am I to the "safe zone"?

Postby RGB on May 23rd, 2014, 12:25 pm

What is interesting reading your posts is that you seem smart enough to identify all of the evidence that is pointing to this being entirely benign (I won't write it again here but there is LOTS!). You are anxious and focussing on your body, a body that happens to be twitching.

Try to relax, try to get plenty of sleep and try not to drop strawberries (they are expensive :) ). Your twitches will subside and, like hundreds before you, you'll worry less and leave this board.

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: How close am I to the "safe zone"?

Postby mjd83 on May 23rd, 2014, 2:34 pm

RGB,

I'd say you absolutely nailed it. I am actually trained as a scientist (M.S. in Ruminant Nutrition) and am taught to think logically. Being trained in statistical analysis, I can rationalize how extremely unusual it would be for someone of my age, to present this way with this disease. On a good day, I can even rationalize that the "pseudo-cramps" I feel in my calves every morning might be a result of the fact that I have probably stood on my toes and hopped up stairs more times in the last three weeks than I have in the last year... and done it under anxiety which I hear actually depletes your muscles more than if you weren't anxious. When I start using my left arm/hand to do EVERYTHING, open doors, turn keys, open jars, and lift books, while giving my dominant side a break from it's usual lion's share of the labor, and than wonder why my left non-dominant arm feels weaker, sorer, and tires faster than my dominant right arm, I can start to see the light a little bit.

However, a few ominous twitches in my calf and a cramp that starts in my foot and all the rational reassurance goes out the window and is replaced by anxiety because people with *** report twitches and cramps! Even now, I have to keep telling myself an M.D. looked at me yesterday and found my strength, balance, and reflexes to be NORMAL, which is supposedly pretty huge... and yet it's still a battle. I've actually discontinued ALL medical google reasearch, and have forced myself to stop staring at my calves (which was creeping my wife out anyway). Seeing them twitch just makes me anxious and I try to put it out of my mind.

Let me put it this way to describe my initial anxiety with this. As an Army Aviator, I have been through the U.S. Army's SERE-C training. This is training meant to mentally and psychologically prepare a soldier to be isolated behind enemy lines, captured, and held as a POW. Army Psychologists have actually done objective studies to measure the extreme levels of cortisol in the blood (stress) during this training, and have reported it to be the most mentally and psychologically stressful training in the military. There were times during this training where I actually thought I was going to lose it... I mean like eating my shoes and talking to my imaginary friend type lose it... in fact 3/4 through the training, I even started hallucinating for the first time in my life from sleep, food, and sensory deprivation.

I would actually compare the mental anguish I felt during the first few days of ALS anxiety earlier this month to the level of mental anguish I experienced in SERE training. It's amazing how psychologically damaging this type of hypochondria can be.

I'm thankfully a lot better now, and that is largely due to the wonderful people on this forum and in the anxiety forum. You guys were right, the worst part is at first and as time goes by it gets much better, because time is on your side with BF(C)S.
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Re: How close am I to the "safe zone"?

Postby Yuliasir on May 23rd, 2014, 11:17 pm

However, a few ominous twitches in my calf and a cramp that starts in my foot and all the rational reassurance goes out the window and is replaced by anxiety because people with *** report twitches and cramps! Even now, I have to keep telling myself an M.D. looked at me yesterday and found my strength, balance, and reflexes to be NORMAL, which is supposedly pretty huge... and yet it's still a battle. I've actually discontinued ALL medical google reasearch, and have forced myself to stop staring at my calves (which was creeping my wife out anyway). Seeing them twitch just makes me anxious and I try to put it out of my mind.


People with ALS do not present twitching and cramps ONLY.
moreover, they may NOT present them or present in negligible amount.
they usually present other clinical signs, well evident to the doctor (even before the patient starts to be concerned).
many of us (me too) have cramps during the night time in the bed or during the day when wearing shoes etc. Many of us being tested reveal very low B vitamine level (have no idea why, I did not tested mine), so probably cramps are related to that fact. For me a month on magne B6 usually helps :)
and you are perfectly right about selftesting - it causes all kinds of pains, cramps and weird sensations exactyl becasue we start to use our muscles in the way we never did it befor or even in the way they are no designed to work (like hopping on the stairs or trying to hold 10 kilo with a pinky finger)
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Re: How close am I to the "safe zone"?

Postby RGB on May 25th, 2014, 5:11 pm

I thought I could sense a fellow scientist. I'm intensely jealous though as my attempts at a career that combined science and flying ended in an over-flowing air-sickness bag :)

This board is a wonderful place but I'm going to add a note of caution. It can give the impression that it is normal to continue the anxiety beyond that initial stage before you have been looked at by a medic. I'm not knocking people who suffer from continued fear but all the evidence is that in the absence of other neurological symptoms over a period of months and having been prodded by someone qualified to do so then this simply isn't ever going to be anything nasty.

If you feel able to then just walk away from this board and any remaining ALS fears. You twitch, that's all.

RGB.
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: How close am I to the "safe zone"?

Postby bfshopeful on May 27th, 2014, 5:27 pm

100% anxiety. Not much more to say.

But if you want some proof...Your story is exactly like everyone else here. You are a run of the mill hypo.
"It's mind over matter. If you don't mind, it don't matter."
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Re: How close am I to the "safe zone"?

Postby mjd83 on June 1st, 2014, 10:12 pm

Thank you all for your responses. I think the scariest part of this for us all is that twitching is not something you cannot just easily ignore. Experienced symptoms have powerful psychological affects for hypos, it's hard to convince yourself it's just anxiety.

I swear every week my twitching routine changes. I used to twitch mainly in calves and legs. After that it was back, under shoulder blades, and some thumpers on my shoulder that I can see through two layers of clothing.. which seemed to the hotspots for a couple weeks. Now, suddenly my left bicep has decided to join the club and (TMI alert) I have a particularly annoying 5 day hotspot in my left butt cheek. You haven't lived until you've had one of those. For some reason, my left side twitches a lot more than my right, I'd say 3 left side twitches for every 1 right side on average.

Now the cramps have mostly disappeared, and I even had a twitch today on my freaking chin, just to the right and below my mouth! I didn't even know there were muscles to twitch there!

I am trying to take it as reassurance that the 1.)the huge variety of locations I'm experiencing twitches,2.) the vast range of twitches I've experienced in the last month (from muscle moving thumpers, to "machine gun" twitches, to tiny dimple twitches I can see but can't feel, some twitches I can't seem but swear I can feel, and even the rare face twitch and "buzzing" twitch in fingers) and 3.) the fact that my reflexes were normal when checked is all far more indicative of BFS than something sinister like ALS (which seems to be described as generally less random, more focused, and more consistent).

Despite feeling "perceived" weakness in my left ankle and left arm, I managed to climb the lighthouse of Cape Hatteras (284 steps or 12 stories) last weekend, and occasionally do a battery of 45 pushups in 2 minutes to check my arm strength.

I am trying to assume that if I even had sub clinical ALS weakness in either of these limbs, that climbing a 12 story winding staircase or doing 45 pushups without rest would atleast be giving me some trouble. I keep trying to go back to that and the clinically normal reflexes... despite some really scary twitching.
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Re: How close am I to the "safe zone"?

Postby Red Raider on June 1st, 2014, 11:07 pm

I have some of the same things you mentioned brother myself being in the Army. I was at Ft. Bragg for awhile well most of my military career. I did some pretty intense training and psychological warfare stuff during my lovely stent at Bragg. I think it has done numerous things to me. When I was in my Q course I started noticing these things and then we started our phases i did pretty good through my year worth of training and then the last part to graduate Robbin Sage I started getting the same feelings but I went on to my group and stayed there and got out and things have never quit. I've been through some crazy training like yourself sere c and so forth boy was that fun lol. What did you fly if you don't mind me asking I would love to talk more maybe we can figure this out man.
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Re: How close am I to the "safe zone"?

Postby mjd83 on June 1st, 2014, 11:57 pm

Hey Red Raider

It's good hearing from you brother. Sorry, I don't know if I responded to your last email or not. My bad if I didn't.

I'm out now (IRR) but flew Blackhawks. I was one of the first flight school classes to go through after the Army decided that all Aviators were required to be SERE-C qualified. Part of what has fueled my ALS anxiety is the fact that this disease seems to afflict a higher proportion of combat veterans, and I worry about some of the nasty things I've flown through, like pollution over Baghdad and burning petrol from oil wells, and God knows what else over there. I really hope some of the environmental factors in war zones don't increase the odds.

I actually just moved from North Carolina, and am quite familiar with Bragg. I didn't realize you were SF. You have my UTMOST respect. Me, and most of the rest of the world, could not do the job you guys do, nor endure the training you guys deal with. My best memories in Iraq were flying in support of the local ODA team on post. All I've been through was SERE-C, and that was more than enough for me. I'm claustrophobic, so you can imagine how certain phases of that training went for me. :) Let's just say I still have nightmares about it from time to time. Being a pilot is easy compared to what you do.

It seems like just as soon as I shake this ALS fear, a new symptom pops up. I just keep marking days off the calendar and figure that every day I don't wake up with foot drop or the inability to unscrew a jar means a smaller chance that I have ALS. I keep telling myself that if I had it, it would have atleast showed in the reflexes with the doc.

Keep in touch man, feel free to email privately if you want. Maybe I can call sometime once I get to Kansas (in the middle of moving/starting new job).
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Re: How close am I to the "safe zone"?

Postby mjd83 on June 2nd, 2014, 12:00 am

Also, I tend to think that the military, flight school, SERE-C, and deployment has definitely heightened my anxiety. I try to remind myself of that every time I diagnose myself with a new life threatening condition... that's it's probably just in my damned head.
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Re: How close am I to the "safe zone"?

Postby Red Raider on June 2nd, 2014, 1:23 am

Hey brother you and I are a lot alike I think of all the bad stuff I endured just like you chemicals, burning trash, and oil and god knows what else. Man I give it to you guys saving our butts a time or two in the heat of battle lol I give my best to some of the 160th guys but I have the upmost respect for all you guys that fly see I couldn't do that man there is only way to go if something happens and that is down I like to leave my options open haha but anyways man I would love to exchange numbers and get in touch I'm out now and finishing my degree at Texas Tech in Lubbock but hit me up when you get settled and good luck. Everything you seem to be going on I have the same man it scares me to death I'm just like you everyday there is something different that pops up that sends me down the ALS roller coaster my friend. Take care looking forward to visiting with you. I started really focusing on things in January so I'm going on 5 to 6 months I've seen aALS specialist and he says I'm fine I went for a follow up just this week and he said everything looked good just like it did 5 months ago. So that is good news.
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Re: How close am I to the "safe zone"?

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