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*beep* it!!! I'm losing it again.

PostPosted: February 29th, 2016, 4:28 pm
by moeSlow
26 year old here. I'm caught up in another panic. I just made a thread about crossing 6 year mark a few days ago. Today, after I got back from the gym, which I haven't been attending regularly for the past two years, I noticed my right leg, which has been one of the main culprits of my anxiety, was feeling 'slow' and 'lagging'.

When I took a picture of my legs, the right leg was visibly smaller in the quads!!! It couldn't be more clear.

I'm losing it!!! OMG. I'd read the posts that were made about people twitching for 7 years before getting weakness, and those studies of 5 years before weakness. I've never had an EMG. Never had a clinical when this started as my GP brushed me off very easily when I brought up my twitching, twice.

First the tongue, and now this.

Has it finally caught up? Has my leg finally reached that point of weakness? I'm a hypocondriac, I've come to accept it. But the tongue weakness and leg weakness is hard to ignore.

6 years...I'm so tired of this. Today, this picture of my leg. It's too much. I tried to convince myself that I bounce my left leg like all day, and maybe that contributed to it preserving it's mass as I was out of the gym for two years. But that's a flimsy excuse. I'm caught between two fears, one of the doctor's visit and getting the diagnosis I fear, and the other of this just worsening into death.

Re: *beep* it!!! I'm losing it again.

PostPosted: February 29th, 2016, 5:26 pm
by Little Lost
Didn't want to read and run as I was passing through forum and caught your post. I remember the first day I discovered that my right leg was thinner than my left, I felt exactly like you. I spent hours by the mirror turning this way and that, looking from all angle. The next few days while out I would run in and out of changing rooms just to see if it had resolved. I tried to think of any reason I could for my leg, and came up with none. I was like a complete maniac and the tormoil in my mind went into freefall. I had been twitching for 2 years at that point. 2 years on and my right leg is still smaller, but I don't even think about it anymore. It probably was always like that but I didn't notice. It has neither got bigger nor smaller.

Please try to calm down .... you don't have that disease. The problem is ALS is mulit system wide so anything that goes wrong with us it is easy to reignite our fear. Be it a weak finger from overuse, a foot drop from cramping during running, to a slur, to a drooping tired eye, to a chesty cough, or a stiff neck from a pulled muscle. Any symptom could be fitted into an ALS profile in our fear driven minds.

Anyway your leg doesn't look overly unequal to me, and muscle wasting tends to work from TA muscles upward so not really in the right direction for ALS. Usually in the leg it is footdrop first. Doubt it would just attack your thigh and miss out the other try to calm down a bit and be nicer to yourself. You will be fine. I know we can't diagnose anything here but we can apply common sense and it all looks normal to me.

Stay strong and ride out this bad patch that's all it is, you are fine.


Re: *beep* it!!! I'm losing it again.

PostPosted: February 29th, 2016, 5:47 pm
by Little Lost

Re: *beep* it!!! I'm losing it again.

PostPosted: February 29th, 2016, 7:23 pm
by moeSlow
Thanks for taking the time to reply, Little Lost.

I'm more than a little lost right now. I thought I'd get over this after the first 2 years of twitching, considering that's what I'd read on this board. Then, I read the posts which discussed people who developed the dreaded disease after twitching for 5 years and some even longer, like 7 years, before they developed weakness.

I should have punched my GP in the face and made him get me an EMG back when this first started and I hadn't been so consumed by the fear. Now, the idea of going to a neuro and getting an EMG is panic inducing.

I returned to the gym after two years away because of busy schedule, and the leg discomfort really bothered me. Add that to my tongue issues, where I think I'm slurring, my tongue has atrophy down the center, I'm getting tingling like feeling on one side of my face. It's driving me into a black hole of depression. There is only so long you can fight off the fear before it just grabs a hold of you.

I've tried meditation, yoga, anxiety book, lectures, whatever. Nothing works.

When I can be sure I don't have the disease? Is there any timeframe? Since I've never had an EMG, am I always doomed to be in doubt? Are those stories about people twitching for 7 years before weakness not completely accurate? What's the deal?

Re: *beep* it!!! I'm losing it again.

PostPosted: March 1st, 2016, 1:41 am
by Yuliasir
Hi moleslow,
nice masculine legs I must admit!
Do not see any major difference on the picture, least any atrophy. Pretty bulky, normal position, etc.

As Littel Lost said, in ALS denervation pattern is from distal to proximal muscles, so person first has to feel problems with hands and feet, and only then in quads and shoulders.

People who twitch for 7 years and more and then developed ALS should be considered as having two non-related conditions - twitching which is very common, and ALS which is relatively rare. Twitches are so non-specific symptom, and almost every person living have them during the lifetime. Sure those people also had EBV, smallpox, running nose, diarroea and other common conditions which are not considred as leading directly to ALS. It is just incorrect to consider their twitching as pre-requisite for ALS.

in fighting anxiety, you seem to try methods which are Ok for people with relatively compensated mood disorder but in your case sems like compensation abilities of your organism are wasted already, and you may need then professional medical help and therapy. Hypochondria is a diagnosis itself and it has proper treatment, why not to try it?

Re: *beep* it!!! I'm losing it again.

PostPosted: March 2nd, 2016, 3:12 pm
by moeSlow
I just can't shake this fear off. My right leg is giving me problems. My hamstring is tight. My ankle feels weak. My tongue is always acting up. My condition has changed over the 6 years. I no longer twitch as much as I did in the first two years or so, but when i do, it's more powerful. Like a big chunk of muscle jumps up.

In the gym, I am weaker than I was 2.5 years ago. Like I'm lifting half of what I used to lift (dead-lift used to be 405 lbs for 5 reps, and now, it's 255 lbs for 5 reps). In the last 2 years, I've lost over 50 lbs through fixing my diet in hopes of a nutritional cure for this, and my loss of strength could be due to this as I did not lift weights during this time.

I'm just scared. All those people posting about how they've beat the fear after twitching for 3-5 years, and here I am, just as worried, if not more.

This is one of those low points I get every year or so. I just got back from the gym and feel a little shaky. 6 years, man. Everyone throws up the studies which says that weakness should show up between 6-18 months of twitching if twitching is the first symptom, but those *beep* stories people throw around here that says there are ALS patients that twitched for 7 years or more before getting weakness. The fear that I'm like one of those is deep within me and I can't shake it.

Re: *beep* it!!! I'm losing it again.

PostPosted: March 7th, 2016, 1:00 am
by leaflea

Logic says you would lose strength. You've been away from the gym. You get back and sometimes bfs doesn't like exercise. Hope you are coping better and remember this "low" happens about every year. People with depression often say the same and perhaps it is related. Remember, the sun always shines again.

Re: *beep* it!!! I'm losing it again.

PostPosted: March 15th, 2016, 2:03 am
by RachelLee
It's been 6 years and you haven't had any significant muscle weakness - I think you are fine. If you are really concerned, you can go get yourself checked out, though, to give yourself some peace of mind. Believe me, I know how it is. I'm 22 (will be 23 at the end of May) and I've been dealing with BFS symptoms since I was 16. I deal with it pretty well now, and have days when I barely even notice it or think about it; I relapse occasionally, but I'm more or less accepted what I have and this site is also a source of encouragement. :wink: But I confess, like many of you, I am also an avid hypochondriac and I have diagnosed myself with a myriad of diseases before, which would lead to self-induced depression/anxiety, only making things worse for myself. It's crazy what the mind can do to you. Overthinking and overanalyzing things about your body can make you think you have pretty much every problem and illness known to man.

My most recent hypochondria issue? I randomly remembered the other night how paranoid I was as a kid when we lived in an old house (and let me tell you, this was 10+ years ago) and after pretty bad water damage on two different occasions, a ceiling tile caved in and that made me think of possible asbestos exposure. Then I started googling again, and obsessing over trying to remember how/if it really was asbestos, and it's gotten to the point that I have spent HOURS researching this and re-scaring myself, instead of college assignments. -_- lol, I'm crazy.

Re: *beep* it!!! I'm losing it again.

PostPosted: April 20th, 2016, 10:52 am
by moeSlow
guys I'm really scared!

I'm having trouble swallowing

My left cheek is weird. it's numb, but not numb, like I can feel it. A big patch of it. And that place twitches. It's been like that for months now!!!

My tongue is not symmetrical, the right side is smaller, which is the SIDE OF MY THROAT THAT IS NOT SWALLOWING FOOD, and the middle of the tongue has big LINES running across it when I flex it.


I'm really scared. I think I have had limb onset that is has been slowly affecting my bulbar and it's finally got to the point where I can notice.

My swallowing problems are clear. The right side of my throat is not working properly. Mucus builds up there and my right ear is BLOCKED.

I'm really scared.

My right leg is weaker. My hamstrings are smaller. The right side of my tongue is atrophying. The whole right side of my body is slowly dying.

I've never had an EMG or been seen by a Neuro. It's been close to six years since this started. I think I messed up. I think my doctor made a mistake not referring me.

I'm really down. I can't swallow the mucus and saliva on the right side of my throat.

My tongue is atrophying. It's scalloped. the right side is smaller. There are major lines running down the middle. I'm slurring. Oh, God! I'm really scared.

Re: *beep* it!!! I'm losing it again.

PostPosted: April 20th, 2016, 12:50 pm
by Yuliasir
bulbar onset could not be side related. If you have something associated with your RIGHT side only, it means you have some local issues, not ALS onset.

Go and see your doctor and get referral to neuro. You may have partial fascial paresis involving throat muscles too, but in ALS bulbar means not sidewise effect but a central one, and not part of your throat gets numb but swallowing reflex is going off.

I mean you may have somehting which needs neuro attention but definitely it doesn not look like bulbar onset but rather as local trauma or damage on the upper neck level.

Re: *beep* it!!! I'm losing it again.

PostPosted: April 20th, 2016, 1:14 pm
by moeSlow
thanks for the reply Yuliasir,

I'm just very confused by my condition. I just thought as time went on, this would mean benign. How can I twitch for 6 years in my calves, thighs, arms, back, feet, and not have clinical weakness if I have an MND? Isn't even the longest timeframe less than 5 years?

That seems to contradict every study, even the those that detail twitching as a first symptom. Just about every patient had clinical weakness within a few years. But I can still walk, still go to the gym and lift heavy weights. How can I deadlift 335 pounds 5 times if I've had an MND in my body for like 5-6 years? That makes me think I'm fine, but then when I'm having problems eating and swallowing saliva, I get scared.

I go from thinking I'm fine after the gym to scared I'm not when I eat.

What is happening to me? Is there another MND that is this slow? I thought twitching in MND meant dying muscles. How slow can this go?

I hate this.