Hello All. I have been having neuromuscular symptoms for over 2.5 years now and would like to compare notes in regards to what my journey has looked like. I know this is a long story but trust me, this is as brief as I could make it.
August 2019 – Started to have muscle fatigue in both arms. But my hands were ok and I could not tell which arm was worse.
October 2019 – Saw a neurosurgeon because I thought this was related to cervical stenosis I had been diagnosed with a few months prior. The neurosurgeon did a few strength and reflex tests, (including Hoffman’s) and they were relatively normal. He then told me to see a neurologist because he didn’t think these symptoms were related to herniated disks.
October 2019 – Saw a neurologist. By this time, I began having twitching that started in my legs and spread to my arms, along with my left foot feeling “off”, like it was weak and sinking into the ground but I only mentioned the arm issues to her because I didn’t want to come off as a patient complaining about anything and everything. She was not board certified and didn’t have the best reviews. I only saw her because she could get me in within a few days, versus other neurologists who were backed up at least a month. She pretty much did the same physical exams the neurosurgeon did. She ordered an MRI of the brain with contrast to check for Multiple Sclerosis, a blood test for Myasthenia Gravis, an SPEP test, and Creatine Kinase test, all of which were normal. She then said she wanted to do an EMG of my forearms, biceps, and triceps, because that is the only place where I told her I felt weak. She said I had carpal tunnel in my right hand on the NCV part of the test. She tested the muscles both at rest and when pushing against her hand during the EMG and said everything looked normal. But when I asked her for a copy of the test, she did not have it. She only typed “EMG was unremarkable. NCV showed mild carpal tunnel.” It was kind of a joke. She asked me if I wanted her to refer me to our local neuromuscular clinic to get a second opinion. I said no, if you’re telling me everything is ok.
Feb 2020 to Sept 2020 – Saw two other neurosurgeons, because I was convinced this was related to my herniated discs. They both said they couldn’t help me and to see a neuromuscular specialist, not just a general neurologist. By this time, my left foot went from just feeling off to having very noticeable dysfunction, like it didn’t work properly. However, I did not have full on foot drop. But there was resistance when I would pull it all the way up.
Sept 2020 – Called my local neuromuscular clinic and they told me I needed a referral from a general neurologist to be seen. Called a general neurologist and booked an apt for Oct.
Oct 2020 – Walked into see the general neuro, who specializes in stroke and was up front with me about not knowing much about neuromuscular disease when I told him why I was there. He admitted that he had never even seen an ALS patient. After I told him about the twitching and weakness in my arms and left foot, he did some reflex testing but not strength tests. It’s important to note that now I am having cramps and what I would refer to as rigidity or spasticity on the bottom of both feet. Like a muscle contraction that does not got away. Even though I told him pretty clearly MS was already ruled out, he said “The first thing I would rule out is MS.” I had to remind him of what I just said. Very frustrating. Then he said that if I want the referral to see the neuromuscular specialist, I need to get an EMG first with one of his colleagues within the same office. Had I known that a neurophysiologist is best to perform an EMG, I would have told him I’d rather wait until I get to the neuromuscular clinic, but I didn’t know any better and agreed.
Nov 2020 – His colleague, who is a neurologist who specializes in headaches, performs the test. He claims the NCV was normal and that the first neurologist I saw was wrong to say I had a carpal tunnel. Then he says “these tests can change on a daily basis”, which I was skeptical of and thought was an odd thing to say. On the EMG part of the test, he tested both at rest and during contraction of the leg muscles, but only at rest during the remainder of the test. As I understand it, you cannot pick up any motor unit potentials unless the muscle is contracted, which is essential when testing for a neuromuscular disease. Verdict – EMG showed +1 positive waves at the left tibialis interior and peroneus longus, which he chalked up to a radiculopathy caused by a disc bulge at L4-L5. The original neuro then ordered an MRI of the lumbar spine, which did show ” disc bulge with possible L5 nerve compression.” He tried to tell me it’s just a pinched nerve on the left side of my spine. I asked him, then what would explain the symptoms in my right foot and both arms? He just shook his head and said maybe magnesium deficiency and not exercising enough. What really stuck out to me is that the neuro who performed the EMG said he could see me twitching from head to toe but not a single fasic showed up on the test. That seemed very strange to me. But he complied and gave me the referral to the neuromuscular clinic.
Jan 2021 – When I walked into the exam room at the neuromuscular clinic, I was surprised to see someone who was being fellowship trained and not the doctor that I was supposed to see. He introduced himself to me and I did the same old, same old – explained to what had been going on for the past year and a half. I have to give him credit, he did a very thorough exam in terms of strength tests. Even looked at my tongue for twitches and all the bulbar stuff. One thing I didn’t like was that he did not have me sit on the exam table and let my feet dangle when testing reflexes with the hammer. He just had me sit in a regular chair with my feet touching the ground. After that, the actual doctor I was supposed to see walks in and just kind of starts rambling. He’s like “So one day you felt your arm was weak…” It was like he was more interested in ruling everything out instead of considering there was something going on. At times he seemed a little belligerent and not acting very professional. He proceeded to do the same tests the doctor who was being trained just performed and then had me walk around the hallway to examine my gait. He concluded the consult by basically saying “ALS is a clinical diagnosis. I don’t rely on EMG. Someone can push the needle the wrong way and that can create a positive wave/fibrillation. I don’t think you have ALS.” I then asked him about some atrophy I had noticed in my right hand, in the area between the thumb and index finger. He said that you don’t have to look for it and it would be more prominent if it was anything to worry about. I wanted to ask him for another EMG to be performed by the neurophysiologist who works at the clinic, but I knew he was not going to order it after he said that. What also makes me uncomfortable – I read some of his reviews online, and he told three different patients nothing was wrong with them and then they ended up having polyneuropathy, myasthenia gravis, and wilson’s disease after seeking out a second opinion. But his credntials showed that he was not only trained in neuromuscular medicine but did an extra fellowship at one of the best ALS clinics in the country. So I go back and forth. I think the primary reason why neither doc thought to purse anything further was because I had fatigue and perceived weakness but not clinical weakness. But he did say to come back if my symptoms got worse.
Present day – Since that appointment 16 months ago, both arms, especially the right has decreased tremendously in strength. Also, I never had weakness in either of my hands but now my right hand trembles when I try to squeeze a ketchup bottle and does not act the way it’s supposed to when I open the cap of a water bottle. The atrophy that was between my thumb and index finger has become more prominent and that area has now started twitching for the first time. There is some atrophy in the palm as well. I’m also having cramps in my stomach, under the ribs, and in my neck. This is not perceived weakness but things are actually starting to fail. The twitching has gotten worse and now it happens when the muscle is in use, whereas before it would happen only at rest. The spasticity/rigidity on the bottom of my right foot has become permanent and is weak like my left foot. I cannot walk on it without my shoes on because the tightening of the muscle makes it painful. Surprisingly, my left foot is still weak but the spasticity is not that. Both feet are very stiff when I wake up in the morning. I have made that appointment with the neuromuscular doctor that I hoped I wouldn’t need and I see him on May 13.
I apologize for the long story. I just wanted some insight, if possible – In your experience, is this normal to go so long without a diagnosis if this is indeed ALS or another neuromuscular condition? I really believe that if the EMG was performed by someone who was actually trained to know what to look for and the neuromuscular doctors I saw took the situation more seriously, I would have had an answer a long time ago. Thanks.
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