Old 01-11-2019, 03:24 AM #1 (permalink)
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Default A delayed introduction

Hello All,

I want to first say thank you for taking the time to read this post. I have avoided posting here for about 1 year but due to changes recently I have decided, still with some hesitation, to post.

I was going to write more of my history but I do not want to take up your time any more than I already am. This is a brief history and list of current status and tests.

June '17 - Twitching in abdomen and arms (Seldom) Continues

February '18 - Twitching becomes widespread, Fatigue is remarkable (Quit teaching during middle of semester and cut hours at my Developer job), A period of cramping in legs and in throat. Cramping stops with in 2 weeks.. PCP says its nothing.Blood Results- IGA Very High but not Monoclonal. Very high LDL and Low HDL High Triglycerides. No loss of weight. Elevated Ferritin.

March '18 - Dyspnea getting worse, Can hardly manage to walk a few blocks with out being very out of breath. Neurologist say it's nothing but schedules EMG. EMG Results - Negative

May '18 - Dyspnea is severe and I am pretty much in bed most of the time. Notice my toes turn purple when sitting in a chair. Toes are very cold and blood flow is not well and acknowledged by PCP.

April '18 - I start to feel better and my symptoms diminish but never go away completely. I still can't do the things I used to do prior to these changes but I can do more. I am sleeping better, breathing better but I find myself clearing my throat very often and still have widespread twitching. (Back to full time at my developer job)

Nov '18 (to Now) - Dyspnea is back and getting worse by the week. Sleep pattern changes are significant and insomnia is common. Circulation (possibly) seems to be poor again as my toes sometimes are white/purple. Twitching is widespread and often. Fatigue is severe again.

What are your thoughts? I feel like my story has some similarities to some I have read but I understand the odds*. Does anyone with respiratory onset have a similar experience?

I can't thank you enough for your time. I have donated to ALS TDI to contribute something back for your time. While I know that isn't enough I promise I will continue to contribute. Thank you so much.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~

Side Notes: I have taken anti anxiety, heartburn and other medications with no help. I think the possibility that a 33yr old have respiratory onset is making my Dr.s very hesitant to investigate further. Heat and mild movement seem to help me which I find to be an odd correlation.

* ~1:33,000,000 based on Risk 1:100,000 * 10 (Age Factor @ 33yrs) / 3% (Respiratory Onset - Overall not age adjusted)
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Old 01-11-2019, 07:44 PM #2 (permalink)
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Default Re: A delayed introduction

Symptoms within ALS do not get better... that's why it's called a progressive
disease. You've had several episodes of comes and goes and come back.

As you wrote...

"Neurologist say it's nothing but schedules EMG. EMG Results - Negative."

No ALS.

You've posted the odds... they're in your favor.
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Old 01-11-2019, 08:46 PM #3 (permalink)
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Default Re: A delayed introduction

I don't see evidence of a neurological disease in what you write, but rather something that should be explored by a cardiologist and pulmonologist.

Confused -- why does May come before April? Which is correct -- the sequence or the dates?

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Old 01-12-2019, 01:11 AM #4 (permalink)
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Default Re: A delayed introduction

The sequence is correct, seems I cannot edit. I started to have some regained breathing for a few months but has gotten very poor. I go to the pulmonary specialist shortly. In the mean time I have had to lower my hours at work as I am so fatigued. Thank you for the input.
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