• Michael Armstrong posted an update 1 year, 11 months ago

    Trying to remember if I’ve already posted my Dx history, but I’ll assume not and give you the summary here.

    I haven’t been formally diagnosed. I’ve got terrific insurance, but so-so medical care which takes forever to get an appointment, and every subsequent appointment, test, etc., takes forever again. But here’s my history, briefly:
    Ca. 2005 I was diagnosed with Idiopathic Peripheral Neuropathy (IPN), after complaining of some numbness in my L foot and maybe a hand – don’t really remember. It was only a nuisance, so I ignored it. I suspect it may have been diabetic-induced; I have never been Dxed with diabetes, but my first A1c test (2014) came back at 6.2, so my doc at the time suggested I watch the sugar. I had been a Coca-Cola addict for 40 years by then, but I quit cold-turkey, and the next A1c (one year later) was 6.0, so we figured that problem was solved. Now, of course, pre-diabetes is taken more seriously.
    But by 2016 I was cycling regularly, and working out in the gym 3 times per week doing reps of 50 deep squats holding a 50-pound weight. Fast forward to March, I was put on a statin for the first time, on general principles — cholesterol was “borderline high” — just under 200. A week or so later, I noticed my speed on my cycling training course had dropped by a few mph. I had done a little reading on statins, and decided it was to blame, so I stopped taking it after only 13 days on it. My cycling speed didn’t return to “normal”, but my doc retired, and I moved to a new state, so the statin issue wasn’t pursued.
    Fast forward again, to December 2017. I flunked an angiogram, so was scheduled for bypass surgery. In preparation for that, I was put on another statin (over my mild objection). Surgery went well, recovery was no fun but seemed to go OK, and 12 sessions of cardiac rehab was OK, but I felt pretty tired. I figured that was normal after major surgery, so that wasn’t pursued.
    But muscle weakness and fatigue after exercise continued. I complained about that, thinking maybe the old ticker wasn’t ticking as well as it should be, but a fresh ultrasound exam showed the heart was fine. I brought up my statin suspicions again, and my cardiologist said to stop taking them, and noted “allergic to statins” in my chart. But things got worse. In July 2018 I was doing some weed-whacking in the yard, and my left leg just collapsed without warning. I was OK after resting for a few minutes, but i had repeated similar incidents, which were starting to trouble me, and by late July I could no longer do a single squat.
    In August 2018, I read an article in The Peoples’ Pharmacy suggesting statins could cause Myositis, which I had never heard, but the symptoms sure sounded like mine, so after the usual delay, my primary care doc ordered a bunch of tests and referred me to a rheumatologist. An MRI showed edema “compatible with nonspecific myositis”. So we tried some meds, a muscle biopsy, and referred me to a neurologist. Seeing my history of IPN, she settled on neuropathy as the problem, scheduled blood test, EMG, Nerve Conduction Study, PT. By November, I could no longer get up from the floor without help. “Help, I’ve fallen, and I can’t get up” was no longer funny.
    For the next year nothing much happened. Lots of PT, bought a cane, then a walker, and a rollator. I continued to decline, and not sensing much sympathy from my crack medical team here, I went to the Stanford Neuromuscular and Rare Disease Clinic, and let the fuss over me for a couple days. They repeated most of the testing, but added that my “his proximal denervation changes in multiple myotomes combined with his physical examination raises our concern for motor neuron disease / ALS.”
    So that’s where I sit. We found the local ALS Foundation support group, and are awaiting further inaction from my neurologist, who was well-known and respected by the Stanford crowd. However, I’m back on the local docs’ schedule, which is to say, glacial. I’ve decided that accelerated progress through the local medical hoops really isn’t important anyway, since no matter what they eventually diagnose, there’s no effective treatment.
    So I just bought myself a wheelchair for Christmas, and I’m going through the whole preparation-for-end-of-life exercise, which is actually proving to be a lot of fun, in a macabre sort of way.
    Sorry for the long history (it’s really the short version of a much longer one). Looking forward to others’ stories and conversations. Have a happy new year, in spite of it all :).

    • Michael, I am sorry your trek through the diagnosis labyrinth took so long 🙁 So, they have determined you have ALS…
      Are you taking any medication to slow down the symptoms — like Riluzole? Yes, there’s (currently) no effective cure for ALS, but there are treatments/therapies and lifestyle behaviors you can do now, that have been shown through research to slow down the progression of your symptoms. The first is attitude. You don’t have to be “happy-happy” but giving up and feeling hopeless, although natural reactions, are not helpful for the long run. Here are a few links to some columns I wrote about my own experiences: (also, my personal blog is: https://alsandwellness.blogspot.com/search/label/About%20Me )

      Reframing Our Approach with a New Kind of ALS Diagnosis

      The 4 Ms: My Formula for Daily Living

      Want to Slow Down Your ALS? Try Smiling!

      Be Willing to Do Just One Squat

      Let me know if you have questions for our members or if I can offer ideas. There is a lot of helpful information in the various topics on our forum.

      • No, they haven’t “determined [I] have ALS”, they’re just “concerned”. So, absent a firm Dx, there’s not much they can do. I just read a paper on ALS diagnosis that showed how much of a problem it is to diagnose, so I don’t expect any swift movement. Another paper said “Higher levels of emotional well-being are associated with slower disease progression but not with better survival in ALS,” which is a mixed message at best, but I’ll take it. I neglected to mention that, other than the inability to do anything requiring standing up, using my hands, etc., I’ve never felt better in my life, so maybe my emotional well-being is a plus, if not an answer. We shall see.

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