Day to day annoyances...can anyone relate?

General Topics

Moderators: JohnV, Arron, garym

Day to day annoyances...can anyone relate?

Postby perform on November 22nd, 2011, 9:09 pm

***IMPORTANT FOR SCARED NEWBIES: Please scroll down and read my reply to this thread as it has important updates!***


So basically after 2 EMGs and clinical exams from 3 neuros I've been told I don't have ALS, and told by my primary care physician that I have BFS. I've been told I am strong as an ox and I have no pathological reflexes (babinski, etc). My reflexes are brisk however. Here's what my life is like right now:

Day to day twitching annoyances for me:
- Calves buzzing/vibrating/twitching especially after walking. My calves twitch at least once a second if not more.
- Arches twitching constantly (at least once a second on each foot)
- Thighs twitching (several times a day)
- Upper back twitching (several times a day)
- Arm twitching (several times a day)
- Thenar muscles twitching (several times a day)
- Occasional throat twitch

My left leg seems to be kind of uncoordinated but not noticeably weak. The knee seems to be weird/loose...when I walk I seem to put more weight on the left side of my foot and the toes feel strange on that foot (they kind of twitch and move around a bit as well). When I lift my foot up the toes on that foot kind of spread out. On my exercise bike those toes seem to just curl inwards with my foot on the pedal. The right side does this too a bit but I either feel it more in the left foot or the toes themselves are looser. The toes are less coordinated than my right foot (for example, I can pick up things using my right toes, but not left, and I can move my right toes more individually). I can walk on both legs tip toes and on the heels and I can lift myself off the ground using only my left leg.

The left side of my neck has a strange pressure/strained feeling off and on throughout the day. I am not sure the cause of this but if I'm on my back and lift my chin up to my chest my neck does shake a bit...I can hold it there with the shaking for a couple minutes but I am concerned about my neck strength. If I turn my head to the left, I get a pain in my upper back. If I turn it to the right I get a pain shooting down my left arm. I have a bulging disc in my neck but was told its not clinically significant.

My arms seem to feel strained/tired just doing simple tasks like taking my meds. I can hold them out in front of me for several minutes and lift them straight in the air but they just feel so strange. My fingers have a bit of a tremor and when I grip objects tightly in my left hand it tremors.

Both of my hands seem to cramp more easily now...after using chopsticks the other day my left hand was so cramped I was shocked.

I do get muscle and upper back pain off and on in my arms and legs...I'm not sure if this is related to BFS or me doing pushups and walking a lot.


Mouth/Throat stuff:

My throat feels really slimy and like I can't swallow all the saliva in there...I can't stop sticking my tongue out of my mouth and staring at it in the mirror. I'm constantly doing acrobatics with my tongue (pushing it on the roof of my mouth till it gets tired, poking out my cheeks till it gets tired, etc. The right side seems to get tired faster than the left. I can do all these things but I seem to recall having more tongue strength than this. My tongue also to me appears to be longer/thinner than it used to be. I never used to be able to touch my nose with my tongue and I now can...when I stick out my tongue it is more pointy than it used to be although I can relax it and it rounds out. I can roll my tongue now and I didn't used to be able to do that either. In my mouth it appears round. But the left and right side in the middle of my tongue are very soft and can be depressed easily. When I pick my back left moler with the tip of my tongue I can see a dent/crease appear on the right side. I worry that I have tongue atrophy as my tongue seems to look different than it used to. I don't know if this is cause I'm sticking it out of my mouth all the time or not. I also wake up every morning with prominent teeth marks on the front of my tongue. I have been told repeatedly I am not slurring my speech but I am afraid to talk nowadays because of my fixation on possible speech issues. My tongue seems to fatigue easier when I'm eating (it felt so tired just eating a cookie the other day). When I talk it just feels weird/uncoordinated and like I'm having to make a real effort to pronounce things and stuff.

I wake up every morning with my jaw clenched tightly together and sometimes my head is literally shaking. My tongue also feels fatigued when I wake up. I open my mouth and my jaw pops open. I feel uncomfortable if I have my jaw open and I subconsciously seem to clench my jaw together all the time.

When I swallow there is a clicking/popping in my throat and it's maddening. I can swallow liquids without trouble but when I'm eating food often is still stuck on the back of my tongue after swallowing. Picking all the food out of my teeth and stuff seems to make my tongue feel tired. I eat much better when I'm not focusing on it so much, though. I also am getting the impression that liquids are coming up my nose when I swallow (this fear has gotten to the point that I've actually drank milk and then tried to blow my nose to see if any milk came out...of course a little did but I'm pretty sure it just came from the back of my throat). My soft palate seems to raise pretty evenly when I'm talking but when I swallow I think the uvula hooks to the left a little but the palate seems to raise evenly as far as I can tell. Last night I literally tried to squirt air in both nostrils while I was mid swallow to test my soft palate closing.

I am fixated on these symptoms and I'm not sure how to get past this stuff. I am doing better than I was a few weeks ago but I'm not out of the woods with this thing yet. I am still bothered and not enjoying my day-to-day life.
Last edited by perform on May 12th, 2012, 4:29 pm, edited 1 time in total.
perform
Senior Member
Senior Member
 
Posts: 88
Joined: October 20th, 2011, 4:13 pm

Re: Day to day annoyances...can anyone relate?

Postby Shanny63 on November 22nd, 2011, 10:35 pm

hey daniel, the way to get past all of this is too accept your diagnosis....believe what your dr and two neuros have told u...u do not have als....u have health anxiety....get help for that and u will get better each day...dont worry about the twitching...its nothing but over excited nerves....and over excited nerves twitch....all the other sensory stuff is just bfs junk too.....you will get better each day if u stop focussing on every single thing your body does...switch off to it.......big hugs shannon :D
User avatar
Shanny63
Saint
Saint
 
Posts: 609
Joined: July 6th, 2011, 2:46 am
Location: Ballarat australia

Re: Day to day annoyances...can anyone relate?

Postby Rellie73 on November 23rd, 2011, 2:25 am

Hi,

I am only new here and suffer major health anxiety. This pattern of symptoms sounds very familiar! I went through the tongue/mouth thing a few months ago, then something else started buzzing/twitching - my current obsession is my hand & pinky finger (that twitches). I don't think I've checked my tongue for quite some time or spent time making an analysis of what my voice was doing or how I was swallowing - I haven't noticed anything strange in the time since I've stopped obsessing over it! I am sure if you quit thinking about it - the same would happen for you. Easier said than done though.

Do you have really busy days when you just don't seem to notice these things as much? I find that happens to me - then I remind myself that haven't been quite OCD about things - and bam, it starts up again.

My post is probably not much help - just wanted to let you know that you are not alone and, to me, it sounds very much like health anxiety. Take comfort in what your Doc's have told you (at least you've got that - I haven't been to a Neuro or had any of the testing!).

Take care.

Rellie.
Rellie73
Interested
Interested
 
Posts: 10
Joined: November 15th, 2011, 12:38 am

Re: Day to day annoyances...can anyone relate?

Postby Pooler on December 4th, 2011, 6:40 pm

Hey Perform,

Your post reminds me a lot of my symptoms (identical) . I also get the clicking in my throat from time to time but never constant. The only additional concern I have is with spasticity in my legs. No weakness just the constant twitching foot, calves, hand, eyes, etc, etc, etc.

Spasticity” is defined as hypertonia in which 1 or both of the following signs are present: 1) resistance to externally imposed movement increases with increasing speed of stretch and varies with the direction of joint movement, and/or 2) resistance to externally imposed movement rises rapidly above a threshold speed or joint angle.asticity in my legs.

If you come across anybody on this forum with twitching and spasticity send them my way.

Cheers,

Pooler
Pooler
Interested
Interested
 
Posts: 19
Joined: November 11th, 2011, 3:36 pm
Location: Alberta

Re: Day to day annoyances...can anyone relate?

Postby perform on May 12th, 2012, 4:27 pm

Just in case any scared newbies come on and read my threads I'm updating all my posts. So here we go:

Day to day twitching annoyances for me:
- Calves buzzing/vibrating/twitching especially after walking. My calves twitch at least once a second if not more.
- Arches twitching constantly (at least once a second on each foot)
- Thighs twitching (several times a day)
- Upper back twitching (several times a day)
- Arm twitching (several times a day)
- Thenar muscles twitching (several times a day)
- Occasional throat twitch


Calves have calmed down quite a bit but still twitch. Arches still twitch constantly. Thigh's on occasion. Upper back, arms, thenar, throat I haven't had in a while or are pretty rare.
My left leg seems to be kind of uncoordinated but not noticeably wea...


Legs seem better, still a bit shaky but improving and I can walk and run and whatnot.

The left side of my neck has a strange pressure/strained feeling of...


This has also gotten much better.

My arms seem to feel strained/tired just doing simple tasks like taking my meds. I can hold them out in front of me for several minutes and lift them straight in the air but they just feel so strange. My fingers have a bit of a tremor and when I grip objects tightly in my left hand it tremors.


Definitely better as well.

Both of my hands seem to cramp more easily now...after using chopsticks the other day my left hand was so cramped I was shocked.


I cramp less but I will get some stiffness after a few minutes during use that recovers quickly.

I do get muscle and upper back pain off and on in my arms and legs...I'm not sure if this is related to BFS or me doing pushups and walking a lot.


Mouth/Throat stuff...


This is definitely important for newbies to read. My mouth issues are a LOT better. My tongue feels better, I can speak and swallow fine. I get occasional odd feelings on my tongue but for the most part this has improved by leaps and bounds. I don't clench my jaw when I sleep anymore either.

I was extremely anxious when I wrote this original thread and it seems kind of ridiculous to me now but I'm going to leave it there so any newbies can see that you can come back from this and you will be okay.
perform
Senior Member
Senior Member
 
Posts: 88
Joined: October 20th, 2011, 4:13 pm

Re: Day to day annoyances...can anyone relate?

Postby Yuliasir on May 13th, 2012, 6:07 am

Oh
thanks a lot!!!!
I had the same nasal issues like you described for the last 4 weeks but being sure it is GERD (which I had been diagnosed with before) I did not put a lot of stress on me. However it is still boring and needs very fine diet etc.

but I am so happy to have confirmation that you are feeling better, including your throat issues.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Day to day annoyances...can anyone relate?

Sponsor

Sponsor
 


Return to General Topics

Who is online

Users browsing this forum: No registered users and 5 guests