[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 483: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 112: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/functions.php on line 4688: Cannot modify header information - headers already sent by (output started at [ROOT]/includes/functions.php:3823)
[phpBB Debug] PHP Warning: in file [ROOT]/includes/functions.php on line 4690: Cannot modify header information - headers already sent by (output started at [ROOT]/includes/functions.php:3823)
[phpBB Debug] PHP Warning: in file [ROOT]/includes/functions.php on line 4691: Cannot modify header information - headers already sent by (output started at [ROOT]/includes/functions.php:3823)
[phpBB Debug] PHP Warning: in file [ROOT]/includes/functions.php on line 4692: Cannot modify header information - headers already sent by (output started at [ROOT]/includes/functions.php:3823)
AboutBFS.com • View topic - please read. please help

please read. please help

General Topics

Moderators: JohnV, Arron, garym

please read. please help

Postby Tb12 on October 18th, 2019, 9:12 pm

Hi guys,

hope you are having a good day.

here is my journey so far, to give you some insight, I really appreciate you taking your time to read this.

8- 10 years of progressive symptoms. I have had so much tests and seen so many neurologists and neuromuscular specialists and still no answers. I Have had 6 emgs in the first 4 years of Symtoms and nothing showed up, EMG only done on arms, legs, cheek. Last Neuro I saw in 2017, thought I might have MS due to my bladder symptoms, once that came back clear he was disinterested.

my Symptoms:
Fasciculations
Cramps
Weakness ( perceived, drs can't feel it on clinical, but I feel it )
Tremors under muscle stress, load
Nerve pain
Fatigue
Joint pain
Muscle tightness
Bladder issues/ bladder not emptying all the way/weak stream
sphincter weakness
Urological and sexual issues
sometimes my thumb on left hand has a mind of its own and doesn't do what I want it to do, like if I'm trying to text and it just isn't going to certain letters etc, only sometimes
Super low testosterone

New symptom started a year ago now, out of the blue about a year ago i kept waking up during sleep with what it felt like i was holding my breath, or a big sniff in would wake me up, or as I just dove off to sleep its like my body stops breathing and I'm aroused awake..

I was Diagnosed with mild sleep apnea and lung function was normal but low end, mild restriction shown. Put on cpap machine, doesnt help much, still waking up cause I'm not breathing, feels like my throat closes or my lungs etc just stop beathing and I'm aroused awake, or distorted breathing pattern feeling waking me up, or noise in throat. I do feel some breathlessness doing certain things.

I know its hard to explain via writing about how severe symptoms are, so I do want to add that I can still walk, talk, run, type etc and everything a healthy person can.

I'm very concerned this could be ALS?

thank you for your time
Trent.
Tb12
Senior Member
Senior Member
 
Posts: 87
Joined: March 15th, 2013, 8:00 pm

Re: please read. please help

Postby J4son on October 22nd, 2019, 6:15 am

J4son
Selfless giver of time
Selfless giver of time
 
Posts: 164
Joined: November 21st, 2013, 12:04 pm

Re: please read. please help

Postby leroyb on November 29th, 2019, 8:31 am

Do you have actual muscle loss TB?

I have all your symptoms BUT I have visible muscle loss in multiple places which cannot be explained and the doctors do not know. I do not have clinical weakness anywhere and I had a normal needle exam in every limb.

My muscles lose endurance but not strength and it is very, very slowly progressive.

I really regret all the time I spent worrying what it was and not living my life to the full. 6 years of it and I'd still have ended up right here in the exact same state so it was utterly pointless.
leroyb
Selfless giver of time
Selfless giver of time
 
Posts: 132
Joined: April 26th, 2014, 4:41 am

Re: please read. please help

Postby Tb12 on December 10th, 2019, 4:00 am

you still on here Leroyb?
Tb12
Senior Member
Senior Member
 
Posts: 87
Joined: March 15th, 2013, 8:00 pm

Re: please read. please help

Postby leroyb on December 17th, 2019, 7:40 am

Yep pm me if you like.

It's probably not a conversation for public.
leroyb
Selfless giver of time
Selfless giver of time
 
Posts: 132
Joined: April 26th, 2014, 4:41 am

Re: please read. please help

Postby naptowntwitcher on February 10th, 2020, 11:56 am

Hi there, any answers regarding your breathing issue? I have something that sounds similar and described to my doc as a hiccup in my diaphram or heart palpitation (but it doesn't feel like a normal heart palp??) - it happens when I'm about to fall asleep and it's like my brain forgets to tell my lungs to breathe in? Weird, I know. I don't think it's apnea as it's happened once in a while if I"m chilling on the couch.

I have been twitching since 2012 but it's really bad now and i have the perceived weakness which makes my mind race but I have to tell myself it's fine! I have been tested for everything from lymes to autoimmune to brain MRI to hormones and the only thing that's come back off is my B12. I just started taking that and my neurologist things that might help with these weird symptoms. Maybe that's something to try?

I've also taken up acupuncture and I recommend you try that. She sees people who doctors have given up on as their symptoms are inexplicable. She has helped i think...my breathing issue seems to have dissipated slightly but I'm not sure it's totally gone. I am thinking acupuncture is helping. My symptoms come in "spells" and this latest one started in my Eyes in October and was there until mid December , then it moved to my diaphram area and now it seems to have moved to my left side of my body where I'm twitching from hands to feet. It's so bizarre. My acupuncturist thinks it could be fibromylagia....not sure if you've ruled that out? Might be something to check on...I'm going to my doc to ask next time. I've learned to mostly ignore my symptoms I know they will go away, it's all about managing the anxiety that comes with them now. Good luck and let me know if you have had any answers on the breathing issue! Stay STRONG!
User avatar
naptowntwitcher
Member
Member
 
Posts: 20
Joined: April 16th, 2011, 8:39 am

Re: please read. please help

Sponsor

Sponsor
 


Return to General Topics

Who is online

Users browsing this forum: No registered users and 12 guests