:( Cant take it anymore please help :(

BFS Online Support Group

Moderators: JohnV, Arron, garym

:( Cant take it anymore please help :(

Postby Josmo on May 30th, 2014, 6:39 pm

Hi Everyone,

I am totally down , I have a neuromuscular appt in july!! my symptoms are getting worse :( I don't believe it is bfs ...its to much
I am so mentally weak i cant take this anymore i am so scared :( i wish i could live few more years healthy but i don't think it will happen.
Stuff going on from may 2013'
Twitching 24/7 body wide jumps from toe to neck face hand back ...... very strong ones
Tremors ... my face , tongue hands and what i notice few days ago my left hand feels weird and when i spread my fingers the ringer is flying ( so i think im staring to have weakness in my left hand only that one finger :( ,it feels heavy and shakes crazy when i try to lift it :(((( , I have a half smile tremor , lips tremor when i try to hold them
People here say it goes away with time .... for me no same some things getting worse .....I am so scared now this finger, and left hand
Please if any one can help in any i just cant take it anymore !! :((
User avatar
Josmo
Senior Member
Senior Member
 
Posts: 62
Joined: July 7th, 2013, 9:42 am
Location: USA

Re: :( Cant take it anymore please help :(

Postby ShawnW on May 30th, 2014, 8:04 pm

None of that sounds like ***. But, it sure does sound like anxiety. And, anxiety is miserable. I had myself a little melt down earlier dealing with symptoms and anxiety. So, I do get it.
ShawnW
Selfless giver of time
Selfless giver of time
 
Posts: 232
Joined: January 8th, 2014, 7:00 am

Re: :( Cant take it anymore please help :(

Postby DoubleD on May 30th, 2014, 11:49 pm

Hey Josmo. You just have to believe you are ok. Believe that I was just like you a couple years ago. I was frozen in fear. I had all your symptoms and more. The mind is very powerful. At some point when you start to pull out of this you will see what you are capable of. You do not have als. It was such a huge point in my life just to type those 3 letters. It had so much power over me. Take back your life. You can do it. One step at a time


After so long with twitching you would be much worse if it was ALS. I know that sounds scary but it is the truth. You don't have it. It's full blown BFs and anxiety. Hang in there youngin

DD
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
User avatar
DoubleD
Saint
Saint
 
Posts: 624
Joined: October 20th, 2006, 9:25 pm
Location: Oregon

Re: :( Cant take it anymore please help :(

Postby Yuliasir on May 31st, 2014, 2:05 am

Josmo,
it goes away but in people who are able to keep their anxiety lower.

I am sure you do a bunch of self tests per day. This along may cause tremors and other unpleasant symptoms. My advice would be to stop it. Our fellow who had finally MND diagnosis reported that he had no seen of felt troubles in his grip yet when doctor found he has subtle clinical weakness in the fingers during the clinical test (wich was rather a grip test not a 'spreading fingers'. Which on my point of view means that you should not do selftests and interpret any of your flying fingers as 'weakness is started'. this is NOT a test for weakness, and you are falling into misinterpretations.
Half smile tremor and lip tremor indicate that you have hyperexcited fascial nerve and that is all.

I really do not know how we can help you take the fact that your own body lives for over a year now without significant and clear neurological deficite. No atrophy, no paralysis or paresis, no loss of motor function etc.
Usually 1 year is about twice enough for development of any clear and undoubtful symptom like I mentioned before.
YOu still have only symptomes of hyperexcitation and seemingly (from your words) no symptom of functional loss. Feeling is not failing.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: :( Cant take it anymore please help :(

Postby J4son on May 31st, 2014, 3:13 am

Josmo wrote:Hi Everyone,

I am totally down , I have a neuromuscular appt in july!! my symptoms are getting worse :( I don't believe it is bfs ...its to much

I am so mentally weak i cant take this anymore i am so scared :( i wish i could live few more years healthy but i don't think it will happen.


Well first I think it’s completely normal to be afraid when new symptoms seem to appear. Often I thought I had completely overcome my fears but when a new symptom occurs I start doubting again for a while. So that’s completely normal. But at least you have now identified your true enemy and that’s anxiety, not twitching or ALS symptoms. You are mentally weak and can’t take it anymore not because you can’t climb a stair, open a bottle of water, hold your cup off coffee; you feel exhausted because you are anticipating a gloom future not because of MND symptoms. So you now know that you should focus all your strength, energy and willpower on beating anxiety not twitching or other symptoms.

Josmo wrote:Stuff going on from may 2013'


I have noticed that people here fall in two different categories: Those for which the passing of time is a true cure, usually after 10 months to a year of symptoms. And those who keep obsessing for years despite all the medical studies that shows that 7 or 8 months of symptoms without weakness are more than enough to rule out ALS or other MND. If after one year you are still afraid, then new strategies should be undertaken, otherwise you could spend years distressing about a completely benign condition.

Josmo wrote:Twitching 24/7 body wide jumps from toe to neck face hand back ...... very strong ones


Exactly like the overwhelming majority of members here, what makes your symptoms any different?

Josmo wrote:what i notice few days ago my left hand feels weird and when i spread my fingers the ringer is flying ( so i think im staring to have weakness in my left hand only that one finger :( ,it feels heavy and shakes crazy when i try to lift it


If I have to count the number of times where I had weird feelings in hands, legs or other body parts that made me think weakness was starting, I could fill volumes of books larger than the Encyclopedia Galatica of Isaac Asimov’s Foundation. Take it as a rule, everything labeled as a sensation have its roots in stress, anxiety and extreme focusing on the body. If you are still able to do what you were doing then you are not becoming weak. I cannot lift a truck with my bare hands because I don’t have the strength to do it; my muscles are weak compared to the Truck’s weight. It’s not a matter of feeling. I do not feel that I can’t lift a truck. I just can’t do it. I had true weakness in my left leg after an ACL surgery in 2006. I never felt my leg to be weak or any other weird sensation in it. I was just completely unable to climb a stair or lift my leg when lying in bed on my back. Weakness is not a matter of sensation.

Josmo wrote:I have a half smile tremor , lips tremor when i try to hold them


LOL I have that too. It’s mostly linked to stress and anxiety.

Josmo wrote:People here say it goes away with time .... for me no same some things getting worse .....I am so scared now this finger, and left hand
Please if any one can help in any i just cant take it anymore !! :((


In my humble opinion you need to target anxiety not your symptoms. Now after one year, you know everything about BFS, MND, twitching, symptoms etc. So staying on internet is like running in circles. It’s time to empty your mind, maybe by taking a break from this board and starting some behavioral changes. You said you have an appointment with your doctor in July. You can make a conscious decision to avoid entertaining your anxiety from now till your July’s appointment. After all you can do nothing regarding your symptoms before your July’s appointment. So maybe for a month you can stay away from anything related to twitching on Internet, to keep your mind busy with useful activities and do some sports to evacuate your stress.
J4son
Selfless giver of time
Selfless giver of time
 
Posts: 163
Joined: November 21st, 2013, 12:04 pm

Re: :( Cant take it anymore please help :(

Postby Josmo on May 31st, 2014, 8:47 am

Thank You Guys so much ....


I know 1 year is a long time , I think about being sick 24/7, my mind can't stop !!!
I have few more questions since it always helps to hear from others ....

As i mentioned i have face tremor i would say all over any muscle if i hold for few seconds will start to tremor i notice that from the start ..... but also my tongue does that !!not when resting on bottom of my mouth , but when i lift him gently it starts to shake ( I know when u stick it out it quivers that's normal ) but its more like a surface tremor looks like area around my eyes shaking or the scary Bag or worms :( anyone???? and also if it was fibs... would it stay whole year with no difference??

Palmaris Brevis spasm .... again both hands from the start i know few ppl have that too i dont understand ??!! :( anyone


Thank You so much it really helps to talk ,
User avatar
Josmo
Senior Member
Senior Member
 
Posts: 62
Joined: July 7th, 2013, 9:42 am
Location: USA

Re: :( Cant take it anymore please help :(

Postby DoubleD on June 2nd, 2014, 8:49 am

if i hold for few seconds will start to tremor i notice that from the start ..... but also my tongue does that !!not when resting on bottom of my mouth , but when i lift him gently it starts to shake


all of this used to happen to me. keep in mind that anxiety makes all your muscles tense, esp the tiny ones, so when you test them over and over they will fatigue fairly quickly and cause these symptoms. Think of it like tightening up you leg muscles super tight then trying to run. They are not going to last long or function right.

You have to stop testing and going on line

DD
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
User avatar
DoubleD
Saint
Saint
 
Posts: 624
Joined: October 20th, 2006, 9:25 pm
Location: Oregon

Re: :( Cant take it anymore please help :(

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: No registered users and 6 guests