please read. please help

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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
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Re: please read. please help

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

Hi Tb12,

It’s been a while since my last post here. It’s sad to see this forum dead. It was and still is a huge source of information on BFS. Gary if you are reading this, isn’t it possible to try to contact John V again, I know it has been done already some years ago.

It’s been nearly 6 years since I have started fasciculating (Started November 5, 2013). It has never been as bad as it is now, yet I have completely put all this behind me, and I have never felt better as today.
I do not see anything scaring or concerning in the symptoms you’ve listed. You cannot spend another 10 years in fear, trying to escape from shadows. Every year that is spent in mere anxiety and concern, is a lost year that will never come back. Worries might come and go, but time is lost for good. What those ten years you’ve spend worrying about ALS did? Did it help you understand your condition better? I bet no, by reading your message.

At some point it is important to accept BFS. To admit that BFS is a part of you. That you are fasciculating like others have recurrent headaches, vertigos, stomach ache or neck stiffness.

Let’s now check a few of the symptoms you’ve mentioned:

Tb12 wrote: 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. .


What’s the point of seeing so many neurologists, doing so many EMG (I saw one and only one neurologist, although I saw him many times over the first 3 years. I did zero emg. And I am so grateful today that I didn’t do EMG? Are you unconsciously looking for the one who’s gonna tell you that you have something serious going on?

Tb12 wrote:my Symptoms:
Fasciculations
Cramps.

I am having fasciculation daily everywhere: Quadriceps, biceps, triceps, back, abdomen, foot, legs, lips, cheek, elbow, shoulder, hamstring, eyelids, rib cage area, hands, neck and many other places. I had hot spots that lasted up to 5 or 6 months. But after 6 years I refuse to give a second thought to these symptoms. I still jog, swim, do rowing machine, and live my life normally.

Although I rarely cramp, yet I had my share of them. I have cramped from time to time and in unusual places like cheek cramps and abdomen cramps.
As long as it is not progressing into some serious disability and weakness, none of these symptoms deserves us to be locked for life in a cage of terror and fear.

Tb12 wrote: 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 .


Just do a simple search on this forum. 90% of the people here experienced those symptoms. Perceived weakness? Everybody had this here. Fatigue, Tremor, Join pain, muscle tightness...??? Use the search function, everybody got this. When you will see a pink unicorn in your bathroom then feel concerned, cuz it’s the only thing that none have mentioned here; for the rest of the symptoms you’re listing, it’s all old déjà-vu.

Tb12 wrote: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..


This is stress, anxiety, depression, sleep apnea or many possible other reasons but it is not caused by an MND that is supposed to have started 10 years ago.

Tb12 wrote:I'm very concerned this could be ALS?


You don’t have ALS, you don’t have MND, it’s time to turn that page, because it’s not worthy after 10 years, to start another decade of worries and panic over a benign condition. What I have witnessed on this forum is that 99% of people here are either able to rationalize pretty quickly within a year of symptoms onset, and move on in their lives, or they spend years questioning what their doctors have said, analyzing every symptom, taking for granted every article they read on Google, and doing tests after tests without being able to find reassurance. I wish you good luck.
J4son
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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
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Re: please read. please help

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

you still on here Leroyb?
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Re: please read. please help

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