Does the worrying ever end?

[reanne2489]

I think part of what make BFS/ BCFS or the "hope" that it's just BFS/ BCFS is that you have to wait for so much time to pass before you can feel you're "in the clear".

I read a neurological study that said for the 7% of ALS patients who presented with only fasciculations as their first symptom, it took, at the longest, 7.2 months before weakness emerged.

Now I have been trying to calm myself down, telling myself OK, I am in the young bracket [25 years old] and female [with ALS having a 3:2 dominance in males [[so so sorry- don't want to seem either ageist or sexist in sharing these facts]]. Of all ALS patients, 10% are <25 years old, and then of that, how many could only appear with fascics first? A very small number, but alas it does happen.

I have calmed down a lot from my full blown panic month when my twitching first became noticeable at the beginning of September. It has now been 2 months! I am trying to look at each day without clinical weakness as a small sort of victory!

However, I do still freak out due to the variable nature of symptoms I experience...
I started with full blown buzzing 24/7 in my left calf as well as some random twitches elsewhere. The buzzing has gone [woohoo] to now be replaced with strong thumper twitches in my rib area, back, shoulder and right thenar muscle. I still, of course, get twitches, mostly in my left leg, but all the right.

The foot and knee pain fluctuates in intensity still, and I was freaked out by my osteopath as the was having me squeeze my thighs against his arms, and ask when I couldn't push harder [my legs are typically very strong] but my left leg [the one with all the twitching] is thinner, from foot to thigh, than my right...so obviously atrophy has been a worry for me.

I feel between buzzing/ twitching, to new locations of huge pulsing twitches, to worrying about atrophy where my body aches is what keeps me on the "ALS fear train". I'm just hoping I can get to April [7 month window] and be confident I'm in the clear.

[LKP1231]

Your emg would have showed signs. It's never too early. I went for emg after 7 weeks twitching and it was abnormal. The drs are saying it's from disks in my back but I don't think that's correct bc I have no symptoms of that. Now I have aching legs all the time where the problems on emg were. You had a clear emg. Whatever it is it's not *** for you.

[Yuliasir]

The drs are saying it's from disks in my back but I don't think that's correct bc I have no symptoms of that. Now I have aching legs all the time where the problems on emg were.

looks like you have signs of what doctors say

[garym]

to answer the question of your post, yes, the worry does end.....should be a really quick process actually, but it never is, but you will get there.

take care,
gary

[SecretAgentMan]

The worrying stops when you change the way you think. This is not easy, but it is doable. Many people have to let the pressure build until they get to that 'change or buckle under the pressure' point. At that point their resistance to change suddenly seems easier to deal with than maintaining the status quo. Basically things get so unbearable in their mind that they begin to open up to options they never considered before. They give up on the way they were by default. Others are able to learn to make dramatic changes to their lifestyle and ways of thinking before they get to that point. Everybody is different...

[Yuliasir]

No. Worrying will never end becasue of several reasosns.
You may be a worrier by nature, by the structure of your brain neuronal pathways.
Even if you was not a worrier before, significant stress might change those pathways in a way which means you are a worrier from now and till the end of life. This is a trauma and the scar would be here forever.

But becasue our mind is a flexible structure, pathways may be controlled to a certain degree and may be re-oriented, again to a certain degree. Worrying was once a highly efficient survival strategy with certain benefits and limited risks, that is why it is bilogically tolerated in humankind

WORRYING COULD (and SHOULD) BE CONTROLLED.
Just remember you got on this board not out of the blue or because you accidentally got a worrying virus. Worrying is a result of many stressing issues, added. mutiplied, neglected (another brain stragety by the way) and BOOOM! Informational pathways are changed, amygdala is hyperexcited, pituitary gland becomes crazy and you come here with all typical symptomes, which normally are described as "I was healthy person, now I'm a wreck" and "I was never a worrier now I can not sleep".

For three years here (and reading the forum down to previous years) I did not find a signle person who really come here out of the blue. Death in the family, death in the close circle, car accident, moving, marriage, matrenity/patrenity, divorce, entering colledge, getting new job, army or poice service, stressful jobs - all kinds of such and similar factors were clearly preceding their twitching and their worrying about twitching state/

as SAM said, change of mind helps. Change of neural pathways by any suitable means - meditation, self-hypnosis or assurance techniques, psychotherapy, medication or by combination of them is the only proven and real way to get out of the worrying circle.
In many people hyperexcitation caused by stress naturally goes down with the time (usually within 2-3 years) but relapses are inevitable, each and every more or less serious stress would resotre the alarm scheme in the brain and ooops (we can see those people reverting back in 5? 7? 10 years saying - ooops I have it again...)

Treat yourself as a person with mental diabetes - you will need efforts and control and treatment till the end of your life in most cases. But this would not prevent you from living full and fruitful life.

[reanne2489]

I know I am a worrier by nature, i just worry that since I have no spinal issues or deficiencies makes me feel like it's a less easily explained form of "BFS".

Also, I had noticed this before my twitching started, but it's become much more prominent recently...my left leg, the one which is slimmer from foot to thigh than the right, and the one with most twitching, has seemed to change in it's structure. By that I mean the calf has much more fat than muscle compared to my right calf, and to look at, the leg looks bumpy [almost like a version of cellulite I suppose]. My right calf is completely smooth by comparison.

I do try to calm myself down by saying, well I had noticed some dents in this calf well before the twitching began, and if the size difference was atrophy then some form of motor neuron damage would have been detected on my EMG.

I know there were lots of problems with translating my EMG from Chinese to English, and initially the first neurologist thought there was a sensory issue and then another neurologist disagreed. I would be inclined to ask my GP to investigate what the first neurologist might have meant by a sensory issue, as my left foot still hurts, and feels the sole of my shoe press into when walking. Hence why I was thinking could this be Charcot-Marie-Tooth which does affect sensory neurones??? After all, my feet do get very cold, and if im bare foot on my tile floor at night, my feet stiff and quite painful.

Any ideas? Thank you!

[SecretAgentMan]

I do try to calm myself down by saying, well I had noticed some dents in this calf well before the twitching began, and if the size difference was atrophy then some form of motor neuron damage would have been detected on my EMG.

Daily, constant, and positive affirmations can be helpful. This statement above is actually negative and I will explain why. Notice that you use the words 'dents', 'twitching', 'atrophy', and 'damage'. Even 'EMG' can be construed as negative because it is not a pleasant mental picture. If I were to tell you, "Don't think of bananas," can you help but think of bananas regardless of the instruction? How can you not when you are using the very word you want to let go of. Words are little packets of energy. Thoughts are energy. When we think of things or say words we are giving energy to the mental construct of that concept. Our reality is defined by our perspective.

In order to let go of your fears and worries you need to stop carrying them with you in your mind. It is not about running away from them. It is not about burying them. It is not about hiding them. It is about letting them go peacefully. To do this you must live in the present moment where all is well if you just let it be. Don't mentally live in the past. Don't mentally live in the future. Pull yourself into the present. The present moment is where our power is. The present moment is where our peace is. Use positive affirmations to help this peace come to the surface. "I am peaceful. I am calm. I am present. I am alive and well. I choose to be happy. I am grateful for..." Notice all of these statements are positive. They don't conjure mental images of that which you fear. They allow you to let them go. It is normal for an undisciplined mind to come back around and try to remind you of the fears and worries, especially at first. Continued focus on the positive will eventually retrain that though. Tools like meditation are very helpful in reprogramming the subconscious mind to be more cooperative, more quickly. It will be your determination, resolve, and focus that determines how successful you will be.