Neuromuscular In memory of Rose Marie.

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Old 12-20-2019, 05:37 AM #1
Tb12 Tb12 is offline
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Tb12 Tb12 is offline
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Default Hi folks, really would love some advice, symptoms, mostly neuromuscular.

Hi guys,

hope you are having a good day.

I'm a 34 year old male.

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 many tests and seen so many neurologists and a few neuromuscular specialists and still no answers.

I Have had 6 emgs in the first 4 years of Symptoms and nothing showed up, EMG only done on arms, legs, cheek.

One Neuro said maybe mitochondrial myopathy, didn't follow it up tho at all, this was 2016.

Last Neuro I saw in 2017, thought I might have MS due to my bladder symptoms, once that came back clear he was disinterested.

MRI has nonspecific white lesions, not MS tho.

Spine MRI: bulging discs in lumbar and thoracic, spinal stenosis in lumbar, degenerative disc disease.

my Symptoms:
2010- Started with stiffness when waking up, feet, shoulders etc..

Fasciculations everywhere - always had a few here and there but in 2012 they broke out over night everywhere whilst in bed a sleep, woke up didn't know what was going on.. along with limb jerks that would wake me..

Other symptoms..

Also 2012 onwards- 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
Gerd

2016 onwards- Bladder issues/ bladder not emptying all the way/weak stream
sphincter weakness
Urological and sexual issues- erectile dysfunction, ejaculation without orgasm sometimes, loss of sensation.

2017- onwards- 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 found in 2018, plus high blood pressure and diabetes

Also in 2018 - I been having sleep issues for just over a year now, which is a new symptom, scaring me..

My throat closes over in me my sleep, or body just stops breathing and I'm awaken with a rush of adrenaline, or cause I'm suffocating, or I wake up from a sniff or a snort

it feels like my my body forgets to breath..

It's every night and it's relentless..

I was Diagnosed with mild sleep apnea (hypopnea)

lung function test was normal but low end, with some muscle weakness detected on the pulmonary test. mild restriction shown.

Was given cpap, it doesn't help at all. I still have all those sleeping issues at night

I have some breathlessness as well

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, do things etc but I feel like it's harder and not how I assume as 35 year old should feel

im very concerned this could be ALS? Even tho Drs have said no. Does anyone else have these sleeping issues? Or lung issues? Or any idea what this might be?
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Old 01-08-2020, 12:21 AM #2
Dave O! Dave O! is offline
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Default Not sure what to tell you.

I just realized this forum was here - ** I've twitched now for about 19 years..**

Last edited by Chemar; 01-08-2020 at 11:19 AM. Reason: NT Guidelines/Please see PM
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