Relapse!breakdown!

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

Moderators: JohnV, Arron, garym

Relapse!breakdown!

Postby Sadface on June 17th, 2014, 6:50 am

Not been on this site or the internet for awhile.
Was still twitching daily, but trying to ignore it.

However, I've relapsed.....
I'm having continuing trouble with my left side: mainly thigh calf and foot. They feel soar a lot, mild cramps on a daily basis. This sometimes affects my left hand and arm.
It's worse when using the muscles!

Twitches still widespread and everywhere on an hourly basis!

I'm convinced it's MND!!!!!

Never been past GP.

Is this even BFS related?
Sadface
Selfless giver of time
Selfless giver of time
 
Posts: 205
Joined: October 25th, 2013, 12:52 pm

Re: Relapse!breakdown!

Postby bobajojo on June 17th, 2014, 7:12 am

On an hourly basis? That barely qualifies as BFS let alone anything worse. My neuro once told me that anytime a patient comes in using the words "feel" or "feels like", its never anything bad. MND patients always say "I can't".
Over 10 billion twitches since May 2011.
User avatar
bobajojo
Saint
Saint
 
Posts: 1013
Joined: July 1st, 2011, 6:41 am

Re: Relapse!breakdown!

Postby Sadface on June 17th, 2014, 7:26 am

Well I think I tune into it hourly.
Sat here watching my body twitch, but it's so fine that it makes me panic :-(
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 17th, 2014, 8:18 am

if you are convinced, what then we can do? You have had decided already about yourself :( without any good reason, considering your post details, but who we are to change your self-diagnosis...
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Relapse!breakdown!

Postby Sadface on June 17th, 2014, 8:33 am

I don't really know what you can do.
But I feel this forum is the only place I can state my thoughts.
I feel things have changed within the past few months, hence why I feel 'convinced'.
Sorry to waste a thread x
Sadface
Selfless giver of time
Selfless giver of time
 
Posts: 205
Joined: October 25th, 2013, 12:52 pm

Re: Relapse!breakdown!

Postby garym on June 17th, 2014, 8:45 am

just about every member here was convinced at some point or another....good news, we were all wrong, and I'm pretty sure you are too. Get some help with the anxiety associated with this crap and get on with your life.
garym
Moderator
Moderator
 
Posts: 1889
Joined: August 23rd, 2003, 1:24 pm
Location: Texas

Re: Relapse!breakdown!

Postby Sadface on June 17th, 2014, 9:00 am

I get one symptom
Panic
Get over it..... Then another one adds to it!

Tried doing yoga but found it made me should soar and now that twitches!

Drained from it all.
Sadface
Selfless giver of time
Selfless giver of time
 
Posts: 205
Joined: October 25th, 2013, 12:52 pm

Re: Relapse!breakdown!

Postby leaflea on June 17th, 2014, 10:24 am

Depending on your fitness level, yoga should make you sore. I did yoga today and had been away from it for many months. I was dismayed to find my limbs all shake and shimmy when I hold a pose, as if they are going to give out. But they don't... and I was able to do about everything I ever could.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 525
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: Relapse!breakdown!

Postby Sadface on June 17th, 2014, 10:44 am

I'm not fit at all. Bit it just made my shoulder feel stiffer and the feeling of wanting to somehow click it, to get it to feel normal. I still have the stiff feeling now.
As soon as I do any exercise even slow walk, it appears to affect me with soar milks crisp feelings.

I twitch daily
Fine ones that I have to stare at. Larger ones I see through clothes, and ones I feel and don't see.
I get little jerks all the time.
Sadface
Selfless giver of time
Selfless giver of time
 
Posts: 205
Joined: October 25th, 2013, 12:52 pm

Re: Relapse!breakdown!

Postby leaflea on June 17th, 2014, 10:51 am

Oh sadface, welcome to the club, welcome to the club! I have twtiches of every strength and frequency, tremors, shakes, quivers, numbness, vibrations and the lovely cramps too!...mostly on the left, but not exclusively. 7 + months in with little improvement except mentally a bit but I have my set backs there too..a bit of exercise intolerance but not too bad...maybe that is what you describe with yoga if exercise is not a regular enough habit you can guage?
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 525
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: Relapse!breakdown!

Postby Sadface on June 17th, 2014, 12:09 pm

Do you get it daily?
Any breathlessness or symptoms you feel are other forms of MND?
Stiff joints?

I thought a few weeks back, that I'd finally calmed down with my fear of ALS!
How wrong I was.
Everywhere possible twitches. Jaw did it before, that was a first!

It's tricky when symptoms are so like als.
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 17th, 2014, 1:27 pm

But what makes you think your symptomes are ALS-like?
it is normal for non-fit person to be sore and stiff after yoga which involves a lot of stretching and isometric strains (non-repetitive constant straining effort, very good for muscles). Feeling need to click in order to feel normal is a muscle agitation which is also not ALS symptom but might be related to over-straining effect.

moreover, it is a specific BFS feature which I call "crazy circus" - for certain period of time (maybe for about a year) it entertains you with changing symptomes until you would go throug all range - twitches of various types and intensity, hotspots, cramps, autonomous symptomes (dizziness, nazal congestions without a cold, yawning, urticaria, breathlessness, heart palpitaion, swallowing troubles), pain in the musles and joints, clicking joints, stiffness in the joints without inflammation, GERD, intestinal cramps and congestions, shakiness and various strange feelings (paersthesias).

Nothing of this is a symptom of ALS because crucial symptom of ALS is quick and specific loss of motor abilities - spastic paralysis, paresis, definite loss of speech ability or swallowing function, extreme fatigue preventing from daily activities, changes on clinical exam and EMG.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Relapse!breakdown!

Postby Yuliasir on June 17th, 2014, 1:29 pm

I also can tell you that I had daily cramp sessions two years ago, in the calves and in the other muscles... and I am still here.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Relapse!breakdown!

Postby Sadface on June 17th, 2014, 1:35 pm

The reason I think it is:
Had anxiety: twitches started, no other symptoms.

Anxuety eased.... Then got a funny sensation in my leg. This progressed to thigh and foot.
Now shoulder. All left side. Twitches I feel and don't always see. Those that I see can be do fine that I use the light off my phone to see them.
I constantly have a twitch somewhere.
I get little jerks within my muscles.
It's all got worse since October 2013. My anxiety recently had been fine, until the shoulder now affected.
So now, most of left side.

I left work early today due to worrying about it!
Sadface
Selfless giver of time
Selfless giver of time
 
Posts: 205
Joined: October 25th, 2013, 12:52 pm

Re: Relapse!breakdown!

Postby leaflea on June 17th, 2014, 8:59 pm

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.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 525
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: Relapse!breakdown!

Sponsor

Sponsor
 

Next

Return to Symptom Management

Who is online

Users browsing this forum: Yahoo [Bot] and 1 guest