Relapse!breakdown!

Information about how to manage or reduce the severity of BFS symptoms

Moderators: JohnV, Arron, garym

Re: Relapse!breakdown!

Postby Yuliasir on June 17th, 2014, 11:11 pm

Mine are also mainly on the left side. it may mean only that you have cortical excitation focus (like in epilepsy or migraine) only in the right hemisphere (otherwise it is hard to explain such unilateral preference). You are not unique, and there are fellows with predominantly right side arranged twitches too.
There are also felows with the fine twitches, coarse twitches, jerks and a combination of those.

BFS does not START with anxiety. It usually starts with stress, infection or other inflammation provoking reasons. It is suspected that we may have chronic glial tissue (grey matter) inflammation - not life threatening but related to involuntary muscle activities. Anxiety is just another symptom, by the way not everybody even experience that (however vast majority seemt to report it). look if you had any trigger recently.

Anyway about a year is a good indication that your twitching is not MND related.

to Leafela: of course I was rather sardonical saying about entertainment :)

By the way my mom had adult asthma onset at 40. Becasue of stress believe me (I left home for higher education, and she was really nervouls about me. In 1 year she got pollynosis and thenm asthma). So I am really not sure that asthma with its clear psychogenic spasm of bronchi could be related to MND onsets.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Relapse!breakdown!

Postby leaflea on June 17th, 2014, 11:40 pm

Yuliasir, I know you were being funny. Regarding asthma, I am not convinced it has anything to do with MND. The only place I saw it was in the book meant to be a sort of novel based on a true story. It was only Morrie's inference. Never seen in mentioned anywhere else in the oodles of reading I used to engage in about that disease. I also agree that anxiety seems to be part of bfs, though not at all convinced it starts with it. It is anxiety about the symptoms and implications, but also just plain general anxiety along with symptoms even if not worried about them. Somehow part of hyperexitability. Don't claim to understand how it all works, just know.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 523
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: Relapse!breakdown!

Postby leroyb on June 18th, 2014, 5:16 am

leaflea wrote:Sadface, bfs is a "syndrome" or more like a constellation of symptoms. It is constantly changing which is so unlike ALS which is really a very straightforward disease comprised mainly of three things: weakness, atrophy, and twitching (lastly, not primarily). I have had breathing issues - asthma since childhood which seemed to worsen a few years ago. I think it is unrelated. But, I read Tuesdays with Morrie where he thinks adult onset asthma was his first symptom. ALS does NOT have stiffness in joints. I do have that. It waxes and wanes. Also some other things that can really freak you out if you let them like frequent yawning, and seemingly increased salivation. All of these are common amongst us. The composition of my muscles and fat distribution has changed with this, but it is not atrophy according to my very experienced neuro. Yuliasir is right - it is a circus. I don't find it entertaining though. I want to get off this ride! Hopefully it slows down after the first year or so. I get flare ups with much more and worse symptoms and then days relatively symptom free (key word = relatively, as I do have some type of symptoms every.single.day.


That's very interesting Leaf because As a relentless body scanner I know my muscles have changed. They don't perform differently but they are very different.
leroyb
Selfless giver of time
Selfless giver of time
 
Posts: 130
Joined: April 26th, 2014, 4:41 am

Re: Relapse!breakdown!

Postby leaflea on June 18th, 2014, 8:51 am

yes leroyb, isn't it true? It moves and changes. So much. Like Yuliasir - a circus with no end of the tricks. Sometimes cannot believe my eyes. I would like to see a thread that people describe the changes they have seen. There is no question my body and muscle texture is different and responds differently, but it still works. Again, it seems to be part of this SYNDROME, not DISEASE.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 523
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: Relapse!breakdown!

Postby Sadface on June 21st, 2014, 1:43 am

That's the concern: 7/8 months and the symptoms I first had, continue and possibly my leg is slightly worse!
However, other things added ie thumb pad being soar and fine twitches.
Isn't this indication that it's not bfs due to consistency?
Sadface
Selfless giver of time
Selfless giver of time
 
Posts: 205
Joined: October 25th, 2013, 12:52 pm

Re: Relapse!breakdown!

Postby Sadface on June 22nd, 2014, 4:05 pm

Can I ask, is this weakness:
1) being able to walk but due to discomforting leg,regar rests required
2)wearing heals: being able to walk: however, ankles and topof foot the next day feel bruised and soar
3) crouching: able to do but thigh aches and feels bruised

Thank you for preservering with me x
Sadface
Selfless giver of time
Selfless giver of time
 
Posts: 205
Joined: October 25th, 2013, 12:52 pm

Re: Relapse!breakdown!

Postby Yuliasir on June 23rd, 2014, 4:28 am

if you have to stop due to discomfort and pain, then it is due to pain and discomfort not due to weakness.

only few of us had experienced clinical weakness (I remember only one guy who had a spinal surgery at the neck level and therefore his nerve running to the arm was compressed by the edematous post-operative tissue, and until this edema resolved and nerve was released, he had postoperative clinical weakness). So those who had that experience usually say nothing about the pain, but only mention complete limitation to do something - this guy said - i tried to lift a cup of water and no matter how I treid, I just can not do that.

best way to check is to get a clinical exam by neuro.

they know what is the difference between perceived and clinical weakness and they know how to assess it.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Relapse!breakdown!

Postby Sadface on June 23rd, 2014, 4:48 am

Thanks. I will ask GP to refer me, as all this has been going on for 8 months now.
X
Sadface
Selfless giver of time
Selfless giver of time
 
Posts: 205
Joined: October 25th, 2013, 12:52 pm

Re: Relapse!breakdown!

Postby Yuliasir on June 23rd, 2014, 5:34 am

good luck with the referral. But it is important to trust the test results. What would be the point to get clinical exam if you would doubt it? so you may need certain self-preparation on order to separate pain and excercise intolerance you have now and clinical weakness. you may ask the doctor what is clinical weakness - suppose he or she would find right words to explain.

I watched recently a pop-sci series called "a history of surgery" - particularly neurosurgery. And the narrator took part in the experiment - he got a special cap, put it in his head, and then he was exposed to so called TMS - transcranical magnetic stimulation. The stumulation he got was in fact a suppressive one. He was writing, and when the emitter was over his motor zone on the scull, he suddenly stopped writing. In a moment. boom.
what do you feel, asked a neurophysiologist. I do not know, answered the narrator. I just... lost the idea of action, how to do that... what it is to operate a hand.
The physiologist removed emitter and he started to write again immediately.

that is what happens when central (upper) motor neurons become silent. Same for lower motor neurons. Your body does not give you a pain or numbness, it just becomes deaf, blind and silent. no power. no wire. no light. A guy who had temporary weakness due to reparative knee cuff surgey (I think it was Arkansan) said he just can not imagine he once can step on the stairs with that leg - it was just so much useless...
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Relapse!breakdown!

Postby Sadface on June 26th, 2014, 6:19 am

Thank you
I went to GP and they said they won't refer me until I get anxiety under control
Horrid circle!!
Back on meds!!!

I go back in two weeks.

Annoying thing... When my foot is tense (like I'm on tip toes) I see tiny twitches but can't feel them.
Noticed it when sat in GPs and I can get it to do it by just hold my foot in a position.
Tiny ones....can't feel but see....bad sign!??

Also, do u have any joints issues like clicking joints or feeling the need to click them x
Sadface
Selfless giver of time
Selfless giver of time
 
Posts: 205
Joined: October 25th, 2013, 12:52 pm

Re: Relapse!breakdown!

Postby Yuliasir on June 26th, 2014, 7:06 am

your GP seems to have some reason becasue when you are so anxious, there would not be any point to see neurologists as neurologists do not deal with the anxiety disorders.
while anxiety will definitely make your reflexes brisk so you would not pass clinical without a note and then your GP would have a long story to explain you again and again that brisk reflexes in anxious people are not a bad sign.
my joints are clikcing since I amn a child so I do not know if they started to be more clicking or not, but many fellows reported that - I think they just become hyperaware to each and every sound, movement etc.
Nope fine twitches are not a bad sign. Bad sign is a foot drop, and you do not have it.

Need to click the joints is just a form of motor agitation common for mood disorders. it is just another obsessive-compulsive action we often make (this may include coughing, scratching, touching cheek or nose - a bit like tick maybe).
as son as you would feel better in term of mood disorder, your need to click the joints would become less.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Relapse!breakdown!

Postby Sadface on June 29th, 2014, 3:12 am

I can feel them to touch under my skin on my foot. I place my hand there and they twitch away. I can't always see them. That's bad isn't it?
Sadface
Selfless giver of time
Selfless giver of time
 
Posts: 205
Joined: October 25th, 2013, 12:52 pm

Re: Relapse!breakdown!

Postby Nytviolet on July 21st, 2014, 6:59 pm

Hi Sadface, like you, my symptoms seem to be worse on the left, and my left arm aches and twitches (mostly while I'm working -- I'm on the computer about 8 hours daily at work). I also have pain and burning in my left foot and a slight feeling of weakness in my left calve (but I can pick up a pencil with the toes of my left foot -- something I'm VERY proud of lol). Like Yuliasir said, MND patients say, "I can't" e.g. "I can't make a fist... I can't grip a pencil... I can't point my toes, etc." They simply lose the ability and (with rare exceptions) it escalates rather rapidly (at the 8-9 month mark, your doctor would be concerned enough to refer you). I haven't seen a neuro in many, many years, but my primary doctor ordered an xray of the cervical and thoracic spine (which angered me, because I wanted a neuro referral). When I got the results, I was surprised to see that I have a very messed up cervical spine between C-2 through C-7 (I posted the report on here somewhere), which impinges on the nerves. If you visit the fibromyalgia or ME/CFS websites, you will see people with our same, exact symptoms. Twitching is not only caused by BFS /MND...it is also caused by hyperexcitability of the nervous system, fibromyalgia, myofascial syndrome, pinched nerves, stress, caffeine, poor posture, scoliosis, thyroid issues, vitamin definiciencies, and some folks just twitch for no reason whatsoever. I have little tiny twitches that I cannot even see, and I have big thumpers that really get my attention. It seems that people who are prone to anxiety (like most of us on this board) tend to marry our BFS with ANY other symptoms that presents. For instance: Let's say you did not have BFS at all, but had an aching arm and/or a feeling of weakness; you would probably assume it's bursitis, tendonitis, posture, pinched nerves, etc. But because we have BFS, we're always on the lookout for another symptom to suddenly appepar & confirm our worst fears, "AHA! So now I have twitching AND ______!!" That being said, (and I'm not trying to diminish the severity or tragedy of MND -- WHICH YOU DO NOT HAVE), there ARE MND patients who simply stop progressing and a few who even see reversal of MND. I'm sure many folks on here have read the stories of people like Evy McDonald or Steve Schnackel (sp) who are still walking and talking many years after diagnosis. Yes, I have my bad days where I let my mind run wild and get the best of me, but it's reassuring to know that there are people out there who are living with MND and probably a lot happier than some of the folks on this board. Your mind can play terrible tricks on you, and something as innocuous as accidentally biting your tongue will suddenly seem like a dire omen. I can tell you (without a doubt) that my left leg is weaker than my right leg... but I am right side dominant (I operate the gas pedal and brakes in my car with the right leg, and my right calve is a almost an inch larger than my left), not to mention one leg is slightly shorter than the other and I've had back problems on and off for years. Every day that I wake up and am able to move my toes and fingers, I am thankful to God. It's a vicious cycle: You see a few twitches in your calves or feet + this causes a panic reaction + this increases blood pressure and pulse rate + this increases neural activity + this creates more twitching = full blown panic attack. I know, because I've been there. I hate to admit it, but I do not leave the house without my anti-anxiety medication in my pocket and I suggest you do the same. It usually helps me settle down long enough to begin thinking rationally again.Try to read / watch uplifting material and avoid Dr. Google like the plague. God Bless :)
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
User avatar
Nytviolet
Selfless giver of time
Selfless giver of time
 
Posts: 122
Joined: June 11th, 2014, 11:48 pm

Re: Relapse!breakdown!

Sponsor

Sponsor
 

Previous

Return to Symptom Management

Who is online

Users browsing this forum: No registered users and 2 guests