Old 09-27-2016, 08:13 PM #1 (permalink)
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Default Sick and frustrated /pending diagnoses

You are an amazing group. Your posts have helped me through a very rough three months of symptoms and no diagnosis.

After ending up in a ball in my backyard weeping 30 minutes ago, it seemed a good enough time for my first post. Perhaps given the length of my first post, I will be banned from here on out and it will be my last, but hope not.

I am please to meet you all. My name is Chris Olsen, I am 40, have three awesome young boys ( 8, 7 , 2 ), a wonderful wife, and a wonderful life ( cliche - but true ). My health and in turn my life flipped topside three months ago has not stopped spiraling.

Three months ago, I was healthy, or at least felt healthy. Played rough with the kids, chased them around the backyard, hiked, biked, etc. I had my share of issues with asthma, allergies, gout, kidney stone (once 10 years ago), eosonophilia esophagitis (throad closed completely a year ago), acid reflux (don't feel it any more), and subtle hand tremors (the latest to develop in the goodie bag of crappy symptoms). The tremors in particular were noticeable when holding objects like a smartphone when resting elbows on a table.
Now that I read that lengthy descriptipn of issues I suppose my health wasn't so good after all.

But, I could at least live with that stuff... and then, late June of this year, I did something I don't normally do as we headed out for a trip to Mammoth. I ate a "health" food bar made mostly of spirulina algea. I'd heard it was healthy and didn't research further. The following day was a nightmare of the typical stomach flu symptoms, which ended a day later with some green goo ( sorry for being gross ). Thereafter, I resumed activities with the family - biking, hiking, etc. Probably a mistake, but I generally felt able.

Over the next two weeks, my intestines never quite recovered, nor did my energy. Then I woke up to go to work one morning and BAM! (original Batman TV show refernce - loved that show!) my body wouldn't leave the bed. This was not the typical monday morning blues kinda feeling. It was as if someone dropped a lead barbell on each extremity. My head throbbed and my brain hurt - something I had never felt before. I could not think, walk, or talk straight. Stupidly, I decided that was a perfect time to head to work. I'm starting to see a pattern of bad decisions here!

At work, even when talking face to face I couldn't focus on any one person,and when talking I sounded like a complete idiot! Good thing I'm in upper management and nobody noticed. But seriously, when spelling words I would mix up the most obvious letters and found myself doing a lot of " I meant to say...." phrasing. And, my short-term memory was a mess. Did I just say that?

A couple of weeks went by and the brain issues subsided for the most part, although short-term memory remains my freind. And, I inherited a seriious of new fun symptoms. I'll list them briefly to spare you:

* Unrelenting fatigue. Perhaps a wrong choice of medical words, but am constantly without energy.

* Insomnia - wake up every single night between 1AM and 2AM. Sometimes I can go back to sleep, and sometimes I can't. I pee when I get up, but it's not necessarily the trigger. I then lay in bed wondering if my breathing is right.

* Right leg muscle is weak ( won't preten to argue clinically weak ) but is losing muscle tissue where it once existed and still does in the left leg. It twiches almost constantly (with a couple day breaks here and there) and I have other random twitches throughout my body.. Of note, my doc measured my right leg and left and agreed with the size difference. Did not comment on atrophy or wasting when I pressed him.

* Can't excercise at all. I stopped running, biking, and can barely walk around the backyard without getting winded or my right leg underperforming. Today I really struggled with breathing and was quite scared. Am still a bit scared frankly as I sit and type this.

* When awaking in the middle of the night, sometimes I'm in a sweat, and sometimes my right arm will feel like rubber or is tingly. I spend 10-15 minutes trying to wake it up.. not the usual "arm fell asleep moment."

* I feel socially awkward. I don't want to hang out with anyone, have been working from home for weeks now ( can't muster the energy to drive and go to work ).

* lastly, what brought me to this forum tonight - my crying. I don't normally cry but have wept uncontrollably more in the past few days then in the past 10 years. My son asked what I was doing - he'd never seen it before...

I have had an MRI ( clean ), an EMG ( NOT entirely clean - will explain), a spinal tap ( pending results - and still enjoying the resulting headaches ), more blood work than I can describe, urine, stool, Lyme, and a partridge in the pear tree.

EMG - both arms had delayed nerve response in the sensory nerves. My right leg F-Wave had delayed response. The pin test, according to neuro # 1 say was "fine." He ended it there and suggested physical therapy. Sigh...

I shared the results with a second neuro ( love PPO's !) and she shared it with a third neuro colleague. They agreed it was not fully clean, and indicators of a "nerve" issue. Ordered more tests, including autoimmune, but didn't want to do another EMG yet ( makes sense, but it's tough waiting ).

In brief summary, my blood work was deemed "normal", with exception of minimally high bilirubin (on one test -- and within limits on a subsequent test ). CO2 and creatine kinase both danced the upper limit line, my testosterone levels came in unusually low, and the autoimmune (ANA?) test showed a 1:40 w/ speckled.. Almost sounds cheery...

## Worth mentioning, I had a vasectomy earlier in the year. I know there isn't supposed to be a link between vasectomies and hormone changes or autoimmune activity, but once the little sperm dudes get injected in to the blood stream instead of where they're meant to go, the body will surely attack such a foreign substance.. anyway, just another piece to my puzzle.

I remain undiagnosed, pending results from my spinal tap, and have scheduled a visit with the UCLA neuro team - a MONTH from now ( feels like I'll be dead by then !). I took a breathing test w/ my PCP yesterday and he said the lungs sounded good, and I scraped by the normal range for my height on the breathing test but the machine labeled me a 56 year old man. I am 40, and slender build so that would seem to be a problem when coupled with my actual breathing issues!!!

Thanks for letting me dump. My wife is sick of me going on about this stuff, and frankly, I have nowhere else to turn. You have all been so patient , helpful, and inspiring that made this the perfect forum.

No response required, but of course thoughts or "Hellos" are most appreciated.

Have a great night.

Chris
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Old 09-27-2016, 08:31 PM #2 (permalink)
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Default Re: Sick and frustrated /pending diagnoses

According to what you wrote your EMG ( pin test ) was normal. The abnormalities you report are in your ncs - sensory nerves in fact. ALS is not a disease of sensory nerves but of motor neurons and ncs results are generally normal in ALS with the EMG ( pin test) being abnormal.

Most of your symptoms are completely not ALS and with unconfirmed atrophy, weakness that apparently was not detected by doctors or you would said? ( so not clinical weakness) and twitching which is completely nonspecific as your only things that are even in the ballpark though out in left field it certainly sounds as if you heading in another direction

To summarize
No reported clinical exam findings to support ALS
Normal EMG
Multiple symptoms that do not sound like ALS
An abnormal ncs indicating a different problem

Good luck. Please tell your doctor about the weeping
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Old 09-27-2016, 08:38 PM #3 (permalink)
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Default Re: Sick and frustrated /pending diagnoses

Hi Chris,

I'm sorry you have so many symptoms but your EMG suggests something other than ALS. Since you have a constellation of other symptoms, I'm not surprised they are doing a very thorough exam. You said you had an MRI. Was it of brain only? If so, did they give you a reason they didn't do the entire spine? ANA of 1:40 is often seen in people with nothing functionally wrong. Also, abnormal breathing tests can be from so many different things including just not getting a good seal on the mouthpiece or sitting with poor posture.

I know it's hard to wait until test results come back and I understand your concern.

Did any doctor even mention ALS because I don't really see ALS when I read your post.
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Old 09-27-2016, 10:51 PM #4 (permalink)
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Default Re: Sick and frustrated /pending diagnoses

I'm curious: did you read the post titled READ BEFORE POSTING?
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Old 09-27-2016, 10:53 PM #5 (permalink)
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Default Re: Sick and frustrated /pending diagnoses

Quote:
Originally Posted by GregK View Post
I'm curious: did you read the post titled READ BEFORE POSTING?
I'm betting the answer is NO
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Old 09-27-2016, 10:57 PM #6 (permalink)
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Default Re: Sick and frustrated /pending diagnoses

Really??? He certainly has more time than we do.
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Old 09-27-2016, 11:09 PM #7 (permalink)
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Default Re: Sick and frustrated /pending diagnoses

yeah but if you want something done - ask a busy person ... ya know
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