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randall's ALS diary (2 Viewers)


Hello i-friends - I'm writing this thread hoping it'll help me deal with some things, clarify my own thoughts for real life, and at the very least be informational.  Hopefully it's not too self-indulgent.  All the events are true.

My town has an annual end-of-summer concert.  It's totally non-profit and is a just a nice smallish town family event.  It's just a decent sized field, with a stage area up front, picnic type seating for the families, and some food tables in the back usually run by different local groups (boy scouts, middle school tennis, church, etc).  The concert is free but there's fundraising and a suggested donation at the gate.

I used to be on the board, but moved on to do other boards' work, but I still take the day of the concert off every year so I can help set up, which is basically carrying things around, roping off different seating areas, putting up signs, working the gates, etc.  This year I did all of that.  I carried around heavy chairs and tables.  I climbed on top of the tables so I could hang signs for concessions.  I walked from gate to gate organizing youth volunteers and scooping the donations so there wasn't too much money left with the kids.  The point is, I was able to do active, somewhat physical work all day, with no issues.  Pretty much just like the previous 47 years.

Later in the evening, I sat with some friends listening to music and talking.  Eventually I excused myself to use the restroom and found myself staggering, as if I was drunk.  But I wasn't drunk.  I had had a single beer at that point.  Yet I couldn't control my feet - it was just kind of random where and when they landed, and I kind of lurched from side to side.  I remember thinking how strange it was and how embarrassing it would be if people thought I was drunk, which, as I mentioned, I was not.

The next day I was fine, and went about my business as usual.

A few days or maybe a week later, my 12 year old had a soccer game, and I went to watch.  At one point a ball rolled out of bounds to me and I went to flick it up  with my foot to my hands - something I've done probably 100's of times - and I ended up mis-timing it, flicking it high and a little behind me and catching it with my hands, but then falling backwards a few steps and eventually falling backwards onto my back.  Hard.  There was a little dip in the ground where I landed (not where I staggered) so I blamed it on that but I knew something else was wrong.

At my older son's high school soccer games I noticed I had a hard time controlling my walk going up or down the bleachers.  Basically I'd be in a controlled fall walking down the bleachers, landing my feet harder and harder on each step, and really having to catch myself at the end.  I also found it increasingly uncomfortable to sit on the bleachers.  I bought a padded bleachers chair with a back, which helped a little, but not enough.

Over the next few weeks I fell a few more times.  I struggled to kick a ball - I couldn't strike it straight on and it went off in crazy directions.  The bleacher issue got worse so that I had to hold on to the railing and walk slowly.

I thought maybe I was just out of shape, so I started going on walks or to the gym more often, but it didn't help.  I definitely almost fell off a treadmill pushing myself too hard.

As some of you know I've struggled with depression throughout my life and I do regular see a psychiatrist.  I mentioned to her the trouble I was having and, having been a medical doctor in a former career, she asked me to show her my walk.  She instantly noticed I had "foot drop" in my right foot and told me to see my doctor.

I went to my doctor that week and he agreed about the foot drop.  He examined me and noted that my leg reflexes (when they hit your knee with the rubber hammer) were very overly sensitive (Hyporeflexia). The slightest touch would make me kick out, hard.  He ordered a bunch of blood tests, some back and brain MRI's, and referred me to a neurologist.

The two neurologists he mentioned had no openings, but another doctor friend of mine got me a very quick appointment with an MS specialist.  By the time I saw him I had a constant mild limp and a hard time with my balance.  He examined me and noted the same hyporeflexia, but now in my knees, achilles', arms, and wrists.  He gave me vision and balances tests, and I couldn't do the balance tests at all.  For example, I couldn't close my eyes and raise a foot without falling over.  I couldn't walk heel to toe without falling over.  He concurred with the MRI recommendation, and also ordered some additional blood tests.  I didn't know it then, but he suspected MS.

NOTE - I'm going to bed, and will pick up the story some other time.  For those of you who are impatient, there is FINAL DIAGNOSIS spoiler in the title.

I didn't read the whole thing. But if I read the title correctly.

T&P man.  My cousin passed from this and it's terrible.  Stay strong.  I'm really sorry

Wow.  Good luck to you and I wish you all the best.  I don’t know that much about it, but I assume it will be a struggle for the he rest of your life.  Really hope there are advances in treatment and you have many fulfilling years ahead.  

I wish you the best Randall.  My company owner/boss has ALS, so I know exactly what you are facing.  He had some other issues going on prior and was heavy on the pain meds for them, so we really don't know when the ALS started.  I admire his refusal to give into the disease, but wish for his family's sake he'd temper that enough to think a little less about work and do the appropriate planning.

All of my thoughts, prayers, and postive vibes to you and your entire family through this battle.   Also--I want to thank you for sharing your story.   I know for a fact that one of my personal weaknesses is getting upset and complaining about stuff that is pretty meaningless and material in the big scheme of things.  Your story has already sparked me to self reflect to realize that I need to not worry about what I don't have--and rather I need to be grateful for the great things that I do have.  Your story has already touched one life and I truly hope that you continue to update this thread so that you can touch many more.  

Very sorry to hear this.  You and your family have my best wishes.  I hope you continue posting here and that we can help in some way.

So sorry to hear this buddy. Take time today and these holidays to put these worries out of your mind and embrace these great holiday moments with your family. Hoping for the best my friend. 

My deepest condolences.  My family will lift up yours in prayer tonight at Christmas Eve Mass.  Stay strong, sir.

So hard to read.  I don't have the right words to express the sadness reading that.  I just hope you get all the help, including emotional help beyond medical care, that you need to help you battle with all you have.  As mentioned above, just sharing this story has already helped some of us appreciate what we have and a constant reminder of what could be. 

I saw this last evening and sat dumbfounded trying to figure how to pass along support to such news. This morning I don't know that I'll do much better, but I wish and your family peace.

There is little support we can provide that doesn't feel like empty words except I appreciate you writing and will definitely continue to follow your story. 

Good morning and thanks for the kind words everyone.

Seeing over thirty of you respond in a few hours reminded me that one of the very worst parts of this that I've dealt with so far has been keeping it a secret despite my desire to just let everyone know.  I noticed my first symptom on August 31 and understood something was seriously wrong by the end of September.  By October I had a limp that couldn't be hidden and was very tired so I needed to rest a lot.  Between the limp and the sleep, I couldn't hide it from my kids (3 boys, 15, 12, and 9) so I told them I was having problems with my leg and some back pain and was going to doctors to find out what it was.  And, when people  would ask I'd tell them the same thing.  That was easy, because at the time it was true.

From October through November I had Dr appointments or tests a few days a week, plus seeing my shrink most weeks.  Also, at some point in October I limped my way through a 4 day trial (legal, not medical).

  • First set of MRI's (lumbar spine, brain)
  • Blood tests
  • Visit with neurologist #1.  I think I talked about this upthread.  I was also having shocks throughout my body, which he didn't see and didn't think much of at the time.  These are called facsiculations and turn out to be important later.
  • More blood tests
  • 2nd set of MRI's (two remaining spine regions) (this time I got the IV and laid in the tube for an hour but the machine wouldn't work so I had to reschedule)
  • Re-take of 2nd set of MRI's
  • 2nd visit with neurologist #1.  He tells me I don't have any abnormal white brain matter, so unlikely to be MS.  This is a great relief, as that was my worry at the time.   Also no tumors anywhere, so not cancer. He seems to think it might be a spinal issue.  He says it's not ALS because ALS doesn't have the quick onset like I experienced (recall that my walking and balance issues basically occurred spontaneously in late August).  He remains unsure of what it could be, however, because I have super jumpy reflexes in both my legs and arms, and a pinched nerve in the spine would only explain my issues below the waist.  I mention the fasciculations again - he is slightly more interested but asks about it in a way that makes me think he thinks I'm making that part up.  I tell him "I get muscles twinges or little electric shocks.  All over my body, but primarily in my arms and legs.  Basically all the time, but I notice it more when I'm at rest.  I can see the muscle twitching," and he responds "so it feels like you are getting little shocks?" or "so you think your muscles are twitching?"  I'm like "No, I'm actually feeling the shocks.  I can see the muscles twitching.  My wife took a video of it that I can show you . . ."  His med school student intern literally confirms that she can see some, but he again seems disinterested.  In any event, this visit is a relief because cancer, MS, and ALS seem to all be off the table 
  • 3rd visit to neurologist #1, this time for a spinal tap.  A spinal tap is to draw spinal fluid, which can have evidence of viral infections that may be causing my problems.  I lean forward sitting on a table to stretch out the space between my spinal bones.  They inject something to numb the bottom of my back, first at the surface, then wait a few, then a little deeper, wait a few, deeper, wait a few, etc.  Then they stick a big ### needle into my spinal column so they can draw my precious spinal fluid.  Despite the numbing you feel and basically hear a popping puncture sound when they penetrate the column.  It's gross, and I have what is known as a Vegal reaction.  This involves feeling hot, weak, faint, and nauseous.  I've had this feeling before, and it was when I had a vasectomy.  It's pretty awful.  And the bad news is that it puts a temporary halt to the procedure.  So I lie down on my side for a while to feel better and when I'm ready they start again.  Sterilizing.  Numbing the surface, etc, etc.  Popping that ####### needle in again.  In the end they have like 10 mg of spinal fluid.  It's clear, if you're wondering.
  • Visit to spinal neurosurgeon to look at my MRIs, hoping to find a disc blockage or something.  A disc blockage is my dream diagnosis at this point.  Something is clearly very wrong and if it could be fixed with spinal surgery that'd be awesome.  So far I still have hope of getting my regular walking/running/jumping back.
  • CT-scan of my lumbar spine which shows some bulging but no impingement of the nerves.  Prior to that CT scan I had to have another spinal tap procedure to put dye into my spine for the CT scan to view.  At this spinal tap I am laying face down on an operating table.  It is much better but still uncomfortable.
Up until now I've been going to all these appointments alone.  I'm not really an emotional person and I see medicine as a science so I honestly never imagined having someone come with me.  At this point my shrink points out that it's totally normal to have someone come with you for Dr's appointments like this for support, and maybe I should ask my wife.  That seemed crazy to me as I didn't think I needed support, but I invited her and she was happy to come and low and behold it was nice to have her there.  On the other hand now we were both missing work and that's getting stressful.  Also, she gets anxious in the waiting room which increases my anxiety.  And finally, my wife thinks the kids shouldn't know that we're BOTH going to these appointments because they'd worry that it's REALLY serious, so now we have to start actively hiding and lying about who went where which day, and that feels very stressful as well.

Back to the exams: 

  • 4th visit with neurologist #1.  I'm steady or worse in most areas.  My walking gait is fully ####ed up. My legs are getting noticeably weaker - I have a hard time standing up from a crouching position, I can't put on my pants or socks or shoes without holding on to something or sitting down.  Things take longer.  I'm falling over more.  I need a banister to walk down steps.  Stepping off of a curb is an adventure.  He says my spinal fluid was perfect, so that doesn't explain anything.  And my CT scan of my spine doesn't show any possible explanatory blockages.  Keep in mind that ALS is largely a "diagnosis of exclusion," which means that they can't really test for it specifically, but they can test for a bunch of other things that could explain your symptoms.  If they test for all of those, and you don't have them, then congrats - you may have ALS.  At this visit the neurologist puts ALS back on the table.  He still thinks it's weird that my onset was so quick, but we are running out of other possible diagnoses.  He orders an EMG, which can hopefully rule out ALS.  At this point we'd rather have a mystery illness.
  • Lastly I had to have an EMG test, which is a two-parter, both unpleasant.  The EMG examines your nerve function by measuring electrical activity in various ways, all painful.  First, they put sensors on your body, give you a mild tasing, and measure how long it takes for the shock to get from one end of a nerve to the other, and how much of the electricity actual gets through.  They do this all over your body, shocking you upwards of 100 times.  Most of this is just uncomfortable but some is awful because your muscles or nerves react and jump.  Next they use a thickish needle with a electromicrophone on the end to measure resting and flexing electrical activity in you muscles.  This is done by sticking the needle into your muscles and listening.
  • There are 2 neurologists at this EMG test - one a resident and one a senior guy, who turns out to be the ALS specialist.  After conducting the tests, they tell me the results.  I have nerve damage in my right leg and left arm.  My electrical signals aren't always going where they should, and there is a lot of excess electrical activity where there shouldn't be.  I ask what can explain this, and the senior guy says "we don't know until we correlate the results with your spinal MRIs, but it could be ALS."  The process is decidedly moving towards the worst possible diagnosis.  Did I mention I'm 47 and have 3 sons under 16?  This is starting to really suck.
That's the end of the examinations stage.  Either that same day or the next morning, neurologist #1 calls me to tell me that results of the EMG again.  I ask him what could cause this, and, like the ALS neurologist at the EMG, says "we still have to correlate the results to your MRIs."  He says they will do that and see me next week.  It's obvious that he's trying to move things quickly.  I ask him if I need to be ready for some really bad news, and he repeats that they don't know because they have to correlate the results, but they'll do that quickly, meet and discuss it, and then see me next week.  At this point it's pretty obvious to me where we're going with this.

That weekend was a nightmare.  I read all about ALS and it's not good.  I read all about my life insurance and work disability plan, etc.  Actually not that bad.  I should mention here that I am a finalist and the supposed favorite for a judgeship at this point and could be getting a call from the Governor any day, so now I have to research the HR benefits at that job and figure out if I would take the job if offered, and if not should I call the Governor now and tell her I'm withdrawing?  All in all it was pretty stressful.  Plus, my wife and I are trying to remain calm and go about our daily lives, but we are certain we're getting an ALS diagnosis on Friday, which makes it really hard to function.

Eventually my wife calls the doctor and makes him fit us in on Wednesday December 5.  He brings us in to a bigger, more formal room than usual and gives us the news.  He has conferred with the ALS specialist and they agree it's ALS.  I have nerve damage in both my upper and lower limbs.  I have signs of nerve damage in my "upper motor neurons" (from my brain to my spinal cord) and my "lower motor neurons" (from my spinal cord to my muscles).  There is no "differential diagnosis," meaning they have no second choice diagnosis.  This is it.

This seems like a good place to stop for now.  I never really got around to my point about how hard it was to keep it secret from my kids and others - I'll hit that next time.  My kids know now, which is a huge relief, but a lot of other people don't, and my wife and I have very different philosophies and needs as far as sharing the information goes.  That's been tough.

I have to say it’s pretty amazing how strongly you seem to be taking this.  Most of us would be a sobbing lump in a corner. 

Good on you, man.  You should think about compiling all of this and publishing it some day. 

All the best to you, and looking forward to reading the rest and getting caught up. Thoughts and prayers and hope you make the most of the holidays with your family. 


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