It's aint look like BFS anymore

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It's aint look like BFS anymore

Postby Martini on March 4th, 2014, 2:34 pm

Hello from Russia to you all!
I should say sorry for my poor english.
I was reading this forum for 2 months or so. But still I can't understand what's going on with me.
22 yo male. Approximately 3 months ago I started to feel muscle twitches. We all know that everyone feels them from time to time, so did I for whole life. But that time they weren't going to stop.I even can't remember where they started, but the spread everywhere very fast. After few days I called Dr Google(usual route, isn't it? :D ) and found some scary links. But for 1st time I was looking at MS mainly. So I went to neuro in closest private hospital. He examined me pretty good and said that he see nothing to worry about. So he gave me some pills and asked to wait some time. But fasciculations increased and after few weeks my friend referred me good doctor in one of the best hospitals in my town. So we started tests. All bloodtests went normal, thyroid was ok, EEG clear, MRI of brain and neck also clear(except osteohondrosis). So we ruled out MS, sorts of epilepsy, and mineral problems. For 2 my visits in 1 month doc were saying that I'm totally ok and he don't believe in ALS, so he don't want to offer an EMG.
But my widespread fascics isn't the main problem. I've started to feel weakness in arm. Well, I agree that it doesn't look like clinical weakness. I still can lift huge and heavy things(20-30kg boxes for example) and I do not drop anything. But brushing teeth and washing my head feels sooo hard. And I should say that my hands and fingers feel totally ok. But my left arm(I'm left-hand dominant) feels really week non stop for 2 months and feels so even now. I do zero exercise for my arms, but it feels like I work hard with them every day so it burns and feels tired. It appears in my shoulder, biceps, triceps,deltoid or forearm(I think it depends on actions I do). Sometimes I feel the same in right arm but only on episodes and not as strong as left one. Past days my forearm especially feels weak and burns. My both wrists became really thinner! I've noticed it by my watches, so it's obvious.
I had 2-3 weeks when my fascics calmed down a lot, but now they came back with previous strength. I'm not sure if I had felt cramps, but rarely some of my muscles feel tight. And of course I have tremor in hands and fingers.
I finally will have my EMG in 1-2 weeks but for now this situation screws me up!

To sum up:
-widespread fasciculations for 3 months
-proximal weakness of left arm for 2 months
-tons of anxiety included
-atrophy(?) in wrists.

I understand that my age, beginning from fasciculations and proximal type of weakness makes chance of ALS quite low, but...

Thanks for listening and replies.
From Russia with love!
Martini
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Re: It's aint look like BFS anymore

Postby ShawnW on March 4th, 2014, 4:03 pm

In your age group...you are right...quite low. I have experienced everything you are talking about. There is something about how chronic adrenaline release effects muscles. I couldn't shampoo my hair without difficulty. My legs were giving out and felt weird. My arms were like lead. But, you know what...I worked on my anxiety...stopped self testing and what do you know it got better.

Look up overuse syndromes. When you self test while in a state of chronic anxiety you cause muscle inflammation and irritability.

My suggestions...

1) Stay off google.
2) Stop self testing.
3) Work on your anxiety...anxietycentre.com was a HUGE help to me.
4) Give your muscles time to heal.
5) I also agree with BFSburger...gatorade is a huge help.

If you do this...come back in two weeks and tell us how much better you feel.

PS-people on here who think they have true atrophy don't. If you need reassurance post some pics...we will take a look.
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Re: It's aint look like BFS anymore

Postby Martini on March 4th, 2014, 4:15 pm

Thank you for reply ShawnW! All sound so clear and easy till you try to overcome it... Hope your link will help me too, haven't seen it yet, thanks!
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Re: It's aint look like BFS anymore

Postby RGB on March 4th, 2014, 6:31 pm

Your English is better than mine and I am English :)

I'm not going to say that it is 'all in your mind' but your 'weakness' is actually how you FEEL about a task which you can still complete. You THINK that your wrists have atrophy (which is a very strange place for atrophy anyway as not a lot of muscle there!) but there can be lots of other reasons (I use a different hole on my watch-strap depending on the temperature or anxiety about this could mean that you have less appetite etc.).

So if we forget how you feel and concentrate on the facts... You have no clinical weakness and none of your doctors are seriously concerned about big, nasty diseases. So the other fact is that there is a very, very high probability that you will have a clean EMG to further confirm your benign twitches.

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: It's aint look like BFS anymore

Postby Yuliasir on March 5th, 2014, 12:04 am

Hi,
What you describe is very typical for BFS. Many of us complain about burning pain and tiredness during simple actions like brushing teeth and washing hair. I personally have this effect since childhood probably due to the fact I am anxious since 6yo and now I am 44 and still wash my hair and brush my teeth daily :)))
as for your wrist, you may rather have subcutaneous fat loss, one of the first effects of prolonged anxiety. Many fellows here complain that in few month or weeks after their fears begin, they noted that hands become really skinny. No one has got an atrophy as far as I know.
22 is NOT the typical age for ALS but it is VERY typical for manifestation of anxiety disorder.
The difference between exercise intolerance and clinical weakness is that exercise intolerance means burning pain and fatigue while clinical weakness means SEVERE fatigue (Like just lifting a hand takes efforts, not pain but efforts, like loss of control), and in the prominent case it means usually painless inability to do a task. Not "my forearm is burning after 5 mins of washing my head" but "tried to raise my arm to wash a head and completely failed to do it like the hand does not exist".
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Re: It's aint look like BFS anymore

Postby Martini on March 5th, 2014, 5:06 am

To be honest it's quite hard to accept your facts in my mind, because some of my symptoms still sounds too weird for me...I hope that I have such doubts due to anxiety. Anyway such support from experienced people is very important for me. Thank you very much, all of you!
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Re: It's aint look like BFS anymore

Postby Yuliasir on March 5th, 2014, 5:35 am

look, person who can do 20-30 kg weights as you say on the workout DOES NOT HAVE NEITHER PROXIMAL NOR DISTAL WEAKNESS IN THE ARM, not at all.
I can tell you again that burning pain after mild activity is common in us and most probably it is related to the fact that your methabolism is totally affected by anxiety hormones.
Good sign is that you have bilateral effect on your wrists - it means that you just get more or less uniformly thinner due to anxiety weight loss and not due to 'atrophy'. Clinical weakness usually becomes very obvious in few weeks. It grows, spreads and disables person pretty well.

Many fellows here are tough athletes, and all of them complain for the same - they are able to work out, swim, run but feel exercise intolerance. The issue of possible connection between BFS and hard athleticism was discussed several times here and it is possible that such connection exists and means only that you really push too much on yourself.

Please remember also that selftesting is also much more restless than any normal activity and may lead to a serious trauma as we had seen here already (torn muscles etc.)
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Re: It's aint look like BFS anymore

Postby banid on May 27th, 2014, 6:02 pm

i'm 22 too,and i have this for 3 or 4 days,my right arm is very very tired,even at rest,it burns when i brush my teeth or wash my head...
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Re: It's aint look like BFS anymore

Postby Yuliasir on May 27th, 2014, 10:41 pm

Banid,
just yesterday I rememberrerd here writing to some of the follows that I have burning pain in myt hand while brushing teeth since I was a child.
I am 44 now.
Burning pain in the hand means only so called excersise intolerance, easy tiredness of the muscle, with the reasons possibly not very clear but I may suggest either increased sensitivity to lactose or bad circulation unable to remove it timely or just increased lactose productivity...

anyway it does not mean ALS.
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Re: It's aint look like BFS anymore

Postby banid on May 29th, 2014, 4:30 am

so all my symptoms should be exercise intolerance,my legs and my right hand,soon the left hand and more...
i have a question,in MND how those the disease progress? firt one limb is affected and after a while you lose that limb and then another limb is affected?
sorry to interrupt in the starter's topic
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Re: It's aint look like BFS anymore

Postby Yuliasir on May 29th, 2014, 4:44 am

as far as I know, in MND like ALS usually loss of function comes fom distal parts to proximal (from fingers to main body joints). Onset usually affects one limb (leg, hand or leg and hand on one side, however hand-hand or leg-leg onsets are possible). Weakness comes gradually so one limb can have still active and dead muscles but it progresses till full loss of function. Usually periocular musclces and diaphragm are the last affected, that is why deeply disabled ALS victims usually can communicate by eyes blinking... and that is why they die from respiratory failure on late stages (if no bulbar or respiratory onset of course).
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Re: It's aint look like BFS anymore

Postby Xina535 on August 20th, 2014, 11:41 am

Hi this is an old post, but I was searching about how onset starts.

I was also wondering: I've heard that mainly, ALS will affect one limb at a time, until it loses function then spreads to another limb/area, until that is done functioning.

If this is true, or the usual case, then if I have a symptom like atrophy in my right hand (no weakness), left leg weird feeling when I walk (not walking right but can still do heels/toes etc.), and I am now starting to have throat spasms/gulping/clearing of the air/hoarse voice/slurring some (which I am attributing to anxiety), then I and other people who complain of symptoms in several areas at one time without any real weakness in any of them really shouldn't be worried about ALS, right?

Despite twitching all over?

Or can it be that ALS can start in several areas at once and progress in each area in different patterns/timeline?
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Re: It's aint look like BFS anymore

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