My diagnosis experience

For me the process of diagnosis was absolute torture. I’ve done enough reading to learn this is a common feeling and many have a longer process than I did. I feel a certain affinity to someone going through the process and those who just received the definitive diagnosis.

Get comfortable. This is my diagnosis experience. Let’s go to March, 28 2012.  I had been dealing with a back injury for two months, and still am to this day. I had already been for a basic X-ray, MRIs, neurological exam, some physical therapy, epidural steroid injections, intra-muscular steroid injections, oral steroids, and I’m surely missing something. The only thing the steroids helped was my appetite. Now I was being sent for a test called an EMG. I usually do my homework before any kind of tests but when dealing with constant severe pain, the usual tends to take a backseat. It sounded simple enough to me. I’ll go there, get back home to my heating pad and carefully placed pillows.

While I was in the waiting room searching for a comfortable position, side to side, sit to stand, I noticed a pamphlet about my test. The first thing that stood out was needles. Not my favorite thing. I read on to something like ‘minor but tolerable discomfort.’ Great! Discomfort is almost always code for pain when it comes to medical tests. I put it back thinking, let’s just do this. I was already in tear worthy pain.

It wasn’t a long wait before I was called back. My husband, Tony, went back with me. Looking back, I’m so glad he did. After the typical weigh in, blood pressure and temperature I was lead to the EMG room. Told clothes off, gown on, Doctor will be right in. Very shortly he was.

I asked about pain and got the well rehearsed “Maybe some minor discomfort” speech. So we began. He placed warm towels on my lower legs. Wow, nice so far. He explained that my skin needed to be a certain temperature to get an accurate reading from the electrodes. Oh OK, what? You’re going to electrocute me too? He promised this would be bearable. This little speech he seemed more comfortable and relaxed. Honest may be the word I’m reaching for. I felt better about this part but dreaded the needles even more now. After some placing and replacing of the little button like electrodes connected to wires, he zapped me a few times and told me everything looked great. It really wasn’t painful. All was well except for my never ending search for the least painful position. There was lighthearted conversation mainly between Doc and Tony while he was preparing. I was almost finished.

Not so fast April. When he was ready he positioned me flat on my back. I’m gripping the handrail with my left hand trying to counter my back pain. “Just stick it in” I said out of desperation. This was followed by an awkward laugh considering my position. This is when I got the first look at the needles. He had been laying them out, and positioning himself in a way that would block them from my view. I giggled inside of how this reminded me of a childhood dental visit. They didn’t look that bad really. They were a little long but as slender as my aunt’s insulin needles I’d seen growing up.

Now he tells me I will need to relax my muscle completely, then he will put the needle in and tell me to flex the muscle until he tells me to relax it. “Do you understand?” he asked. I replied that I did. I relaxed and in went the first needle, mild ouch, “OK flex” more ouch but I can handle this I thought. The needle didn’t come right out though and he started moving it around deep in the muscle. The machine was making a loud popping noise off and on. After a few of these it was past discomfort and well into the pain zone. I wanted to stay tough though. A couple more needles up the leg and I noticed a change in his demeanor. He went from being lighthearted and mild mannered to intense and distant. He was very focused on the popping machine. I looked over at my husband and he was buried in his phone. I don’t think he had noticed the change yet. We don’t talk about this day often.

By the top of the leg I gave in. Between my back pain, the digging needles and the surprise when I looked down and saw the blood soaked alcohol pads, the tears came rolling along with groaning cries. My husband came over to comfort me and I think this is when he noticed the change in atmosphere. The Doctor said there was a little more blood than usual, but I wasn’t expecting blood at all. We concluded the massive amounts of ibuprofen I’d been taking for my back had thinned my blood causing me to bleed easy. Don’t get me wrong, there wasn’t massive blood loss. There was just a lot of alcohol pads. The type you might see a spot of blood on after a shot. These were all bloody. He put the pile of pads in the trash and said to relax a minute while he stepped out. That’s when my husband and I both mentioned the change and how odd it was. I could see the concern on his face. What is going on, I thought. I hoped he would come back and tell me I can dress and leave.

He came back in the room with the same intensity and said he was going to continue up. Some of this becomes a blur. He had me change positions with almost every needle. There were needles put in my arm and several in my back. I remember being told to put my leg to my chest. I didn’t care anymore, I was crying loud and nonstop. I came in with severe back pain, and all the positions made it worse. Add the tense atmosphere and I was in unbearable pain. I don’t sweat. I don’t know why but I haven’t since puberty. My mother is the same way. This is the closest I’ve come to sweating in well over two decades, and I’ve had some intense workouts. I guess clammy describes it best. I was moist on the back of my neck and upper lip, and it wasn’t over yet. He moved to putting needles in my neck, pop pop pop goes the machine. Surprisingly my neck wasn’t close to the most painful. He goes last under my chin. This left a bruise lasting several weeks. Finally he decided I had endured enough needles. He apologized for the pain and asked me to sit up. He gave me a minute to gain my composure.

OK, will you stick out your tongue? This seemed easy enough so I stuck out my tongue and said ahhh. He didn’t need the ahh sound. He just kept staring at my tongue. I finally asked if I was doing it wrong, I only know of one way to stick out my tongue after all. I remember my husband telling him I was tongue tied as a baby and had my tongue clipped underneath. We were just baffled as to why he just stared at my tongue. If not for the long ordeal, it would have been funny. I later learned certain tongue fasciculations (twitches) are typical in bulbar ALS. Finally the tongue gazing ends. Odd but painless. He moves on to my reflexes from jaw to ankle. I remember my leg flying up with the common knee tap and thinking I have really great reflexes, no worries there. Oh, the ignorance bliss days. I had so much to learn. I remember he placed my hand palm up and pushed my fingers flat and watched intently as my fingers bent back up. I’m started to think I’m dealing with a quack that just tortured me. Other than scraping the bottom/side of my foot and some walking, which I’d been having trouble with since the back injury, that’s about all I can somewhat clearly remember but I think that’s enough. Finally he seemed finished and I asked “Is something wrong with me?” He just calmly told me to take my time dressing and he would be back to speak with us.

When he left the room, we noticed the lights were out in the office. I had no idea how long we’d been there. It seemed like we had been stuck in some type of time warp limbo state. I was exhausted and Tony looked pale. I dressed and we sat down feeling lost. We had no idea what just happened. We just knew it wasn’t good.

He finally returns with my file. He tells me he sees my back injury and knows the pain it’s causing. Instant relief in my mind. I thought to myself, my God, I thought he was going to tell me I’m dying.

Wait, April give the man a second. Another look at him and the fears returned. This can’t be good. He seemed to be stalling. Finally after turning more file pages, he said, “There is also something else concerning me.” I’m thinking OK spit it out. Then it comes “Are you familiar with ALS?” I immediately knew what he was talking about. I had ironically watched a documentary a couple days earlier. Nothing about the film made me think I had it, but I was informed and I immediately knew he was right. Everything started coming together. Still I said, “Maybe it’s just my back injury mimicking?” “No” he said without hesitation. I can see your back injury and we are dealing with two different conditions completely separate of each other. My husband sat pale and silent.

Things quickly started adding up and making sense. I had been complaining to my husband for several months that I couldn’t exactly put my finger on it, but something was off with me. I could still do anything I ever had, and I was very active all the way up till my back injury. I finally chalked it up to the fact I was pushing 40 and that’s a well known time for change. I put my focus on taking quality vitamins and accepting I was getting older.

He gave us some print outs from the Mayo Clinic and strongly advised us not to look up information on random sites, if we look it up stay with major ALS Clinics for information. He didn’t want to answer my questions about dying. He explained this is considered a differential diagnosis, and with a condition like this I’ll need a second opinion. He said I’ll be referred to an ALS clinic with a neurologist who specializes in ALS for this, and from his examination he felt I met the criteria for probable diagnosis. I was taking in this information knowing I had ALS. My husband took everything possible, such as the term probable diagnosis, to be lead far away into the land of denial. There was a time I actually wondered if he’d return before I died. As we left Tony Basically thanked him for his educated guess. We rode home in silence and into the abyss of ALS. Life would never be the same.

I’m lucky to live close enough and be referred to two great ALS Clinics. Vanderbilt in Nashville, TN and Emory in Atlanta, GA. I assumed with this being such a serious diagnosis I’d be getting a call right away. This was one of my first hard lessons about ALS. There’s no big hurry to see you because there is no real treatment to offer you. It took about four long weeks and I finally heard from them both in the same week and scheduled appointments. Surprisingly again, neither could see me for two months. In the meantime, I still had my back to contend with as well as the fact Tony wouldn’t even entertain the idea of ALS. It was a lonely scary time.

My first visit was with Vanderbilt. The Neurologist looked at my records, did some tongue gazing, push, pull this and that. He placed his hand softly on my bare thighs quickly explaining he’s feeling for muscle twitches. Yes, I had felt muscle twitches lately but seems like I always had. Nothing to be concerned about, usually it’s not, unless you have ALS I quickly learned. He left and came back to the room where I sat with Tony and my Mother. He wasted no time in saying he agrees with the diagnosis but still wants to do an EMG himself. I felt like crying then. I already knew I had ALS so another EMG is what upset me most. It renewed Tony’s denial. He promised he would be doing the EMG himself. For some reason, that eased my fear a little. I scheduled and left.

When I returned to Vanderbilt I was lead to a small room with a similar looking machine as before. To my surprise a doctor doing a fellowship would be doing my EMG. He was nice, and struck up conversation well with Tony. It was like two old buddies getting together. I was more like an afterthought. He did a very simple needle in flex, needle out in a fraction of the areas and then told us, he saw a couple abnormalities, but nothing that couldn’t be explained away. He went to show his hard work to the neurologist and came back with a different attitude. The neurologist came in with a resident that looked all of 17 and said he still believed the diagnosis was right even if he hadn’t seen this EMG. I was upset he lied about doing it himself. I felt tricked into be a guinea pig. I left there upset and Tony still felt this was all a big mistake.

The Emory appointment finally came. I didn’t know what to expect. Were they going to hand Tony a large platter of hope to take back to denial land? I first saw a very calm and kind Doctor, but I’m not sure if she was doing fellowship or what. She was nice and did much of the same. She said she and Dr. Glass would go over my records and they would be back.

She walked back in with the ALS specialist, Dr. Glass. He went through his own exam, tongue and all.  He sat down in a chair. There was two other clinicians standing, my Mother sitting on a sofa, I’m on the exam table with Tony beside me. There was conversation still going around softly. Then Dr. Glass straight forward said, “You have ALS.” Even though I already knew, it hit me hard. I felt the blood leave my face and the air leave my lungs. I looked back and forth between Mom and Tony. A couple of tears rolled and I was handed Kleenex box. My mother spoke first. “What do we do now?” This is the most common and most difficult question he hears. There is no cure. He can offer the benefits of coming to Emory and sitting in one comfortable room while all the specialists that ALS patients need throughout progression come to you. There are clinical trials to participate in too.  Some people get their diagnosis and never want to come back, I respect the way anyone chooses to go forward. For me I want to help by participating in clinical trials, and I feel I’m at the best center and under the care of the best researcher. Dr. Glass always exudes compassion when with his patients. I never feel hurried even though he’s always busy. You sense the passion he has for getting to this beast that has killed so many of his patients. I leave with a sense of fresh hope that this war will finally be won, and maybe just maybe in time for me to benefit from it. I don’t know how he does it but it is awe inspiring. This goes for all the staff I’ve met with at Emory ALS Clinic. Everybody is there for a purpose and with passion.

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  1. annesquared says:

    Very nice telling of your story, thank you. You seem so even keeled throughout…

    • aprilals says:

      Thank you. It was easier to write about than to experience. It’s one big reason I chose to participate in th Validation of Biomarker study. I hope for a blood test to diagnose ALS avoiding the expensive and sometimes painful procedures, not to mention the time of living in limbo and fear about diagnosis.

      • annesquared says:

        So many tests are painful! I’ve been skewered for bone marrow enough times – “Oh heck, just get it over with!”
        Novel research – so important!!

  2. April,
    Reading this tonight made me feel your every pain. When my husband, Dan, went to meet with his, not known at the time,ALS doctor for the 2nd time and 6 weeks later…Dan went alone thinking it was a routine follow up. At this appointment,he had his EMG testing. What graphic detail you gave. He never shared all the “gory” details with me.In many ways, he protected me from the real truth of how he was really doing. I appreciate your detailed recollection. My hope is that you find peace and know the Lord Jesus Christ is right there alongside you, carrying you through this!

    Love & hugs,
    Suz Porter

    • aprilals says:

      I am glad my husband was with me in the room that day. I had know idea how life changing that appointment would be. People handle things differently and it’s apparent he wanted to shield you from pain as much as possible. There are many limitations to that with ALS. Through your blog posts it’s clear it was painful for both of you to see the other hurting. I’m glad you understood the need to let this pain out at times, by screaming or whatever it took. Caregivers carry a huge burden! I have been thinking of you and I can only imagine the pain is still raw. I’m glad to see you keeping yourself busy. Keep it up at your own pace and and don’t forget it’s still OK to scream when needed. I thank you on behalf of all pALS for being there for him how you were. Sadly not all pALS have that. Its time to take care of you now.


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